Considering the sensory dimension of clinical decision-making is a challenge for the training of health professionals. Therefore, how can we help them stimulate a form of sensory acuity? We conducted a study in partnership with the Simulation Laboratory of a Canadian hospital to understand the sensory work accomplished by nurses during a clinical decision-making. To do this, we analyzed the interactions occurring during focus groups to reveal the sensory work performed by nurses (...) during the clinical evaluation of patients (personas). (shrink)

BackgroundAttention deficit hyperactivity disorder is clinically diagnosed; however, quantitative analysis to statistically analyze the symptom severity of children with ADHD via the measurement of head movement is still in progress. Studies focusing on the cues that may influence the attention of children with ADHD in classroom settings, where children spend a considerable amount of time, are relatively scarce. Virtual reality allows real-life simulation of classroom environments and thus provides an opportunity to test a range of theories in a naturalistic (...) and controlled manner. The objective of this study was to investigate the correlation between participants’ head movements and their reports of inattention and hyperactivity, and to investigate how their head movements are affected by different social cues of different sensory modalities.MethodsThirty-seven children and adolescents with and without ADHD were recruited for this study. All participants were assessed for diagnoses, clinical symptoms, and self-reported symptoms. A virtual reality-continuous performance test was conducted under four conditions: control, no-cue, visual cue, and visual/audio cue. A quantitativecomparison of the participants’ head movements was conducted in three dimensions using a head-mounted display in a VR classroom environment. Task-irrelevant head movements were analyzed separately, considering the dimension of movement needed to perform the VR-CPT.ResultsThe magnitude of head movement, especially task-irrelevant head movement, significantly correlated with the current standard of clinical assessment in the ADHD group. Regarding the four conditions, head movement showed changes according to the complexity of social cues in both the ADHD and healthy control groups.ConclusionChildren and adolescents with ADHD showed decreasing task-irrelevant movements in the presence of social stimuli toward the intended orientation. As a proof-of-concept study, this study preliminarily identifies the potential of VR as a tool to understand and investigate the classroom behavior of children with ADHD in a controlled, systematic manner. (shrink)

ABSTRACT I argue that this examination and appreciation for the shift to abductive reasoning should be extended to the intersection of neuroscience and novel brain-computer interfaces too. This paper highlights the implications of applying abductive reasoning to personalized implantable neurotechnologies. Then, it explores whether abductive reasoning is sufficient to justify insurance coverage for devices absent widespread clinical trials, which are better applied to one-size-fits-all treatments. INTRODUCTION In contrast to the classic model of randomized-control trials, often with a large number (...) of subjects enrolled, precision medicine attempts to optimize therapeutic outcomes by focusing on the individual.[i] A recent publication highlights the strengths and weakness of both traditional evidence-based medicine and precision medicine.[ii] Plus, it outlines a tension in the shift from evidence-based medicine’s inductive reasoning style (the collection of data to postulate general theories) to precision medicine’s abductive reasoning style (the generation of an idea from the limited data available).[iii] The paper’s main example is the application of precision medicine for the treatment of cancer.[iv] I argue that this examination and appreciation for the shift to abductive reasoning should be extended to the intersection of neuroscience and novel brain-computer interfaces too. As the name suggests, brain-computer interfaces are a significant advancement in neurotechnology that directly connects someone’s brain to external or implanted devices.[v] Among the various kinds of brain-computer interfaces, adaptive deep brain stimulation devices require numerous personalized adjustments to their settings during the implantation and computation stages in order to provide adequate relief to patients with treatment-resistant disorders. What makes these devices unique is how adaptive deep brain stimulation integrates a sensory component to initiate the stimulation. While not commonly at the level of sophistication as self-supervising or generative large language models,[vi] they currently allow for a semi-autonomous form of neuromodulation. This paper highlights the implications of applying abductive reasoning to personalized implantable neurotechnologies. Then, it explores whether abductive reasoning is sufficient to justify insurance coverage for devices absent widespread clinical trials, which are better applied to one-size-fits-all treatments.[vii] ANALYSIS I. The State of Precision Medicine in Oncology and the Epistemological Shift While a thorough overview of precision medicine for the treatment of cancer is beyond the scope of this article, its practice can be roughly summarized as identifying clinically significant characteristics a patient possesses (e.g., genetic traits) to land on a specialized treatment option that, theoretically, should benefit the patient the most.[viii] However, in such a practice of stratification patients fall into smaller and smaller populations and the quality of evidence that can be applied to anyone outside these decreases in turn.[ix] As inductive logic helps to articulate, the greater the number of patients that respond to a particular therapy the higher the probability of its efficacy. By straying from this logical framework, precision medicine opens the treatment of cancer to more uncertainty about the validity of these approaches to the resulting disease subcategories.[x] Thus, while contemporary medical practices explicitly describe some treatments as “personalized”, they ought not be viewed as inherently better founded than other therapies.[xi] A relevant contemporary case of precision medicine out of Norway focuses on the care of a patient with cancer between the ventricles of the heart and esophagus, which had failed to respond to the standard regimen of therapies over four years.[xii] In a last-ditch effort, the patient elected to pay out-of-pocket for an experimental immunotherapy (nivolumab) at a private hospital. He experienced marked improvements and a reduction in the size of the tumor. Understandably, the patient tried to pursue further rounds of nivolumab at a public hospital. However, the hospital initially declined to pay for it given the “lack of evidence from randomised clinical trials for this drug relating to this [patient’s] condition.”[xiii] In rebuttal to this claim, the patient countered that he was actually similar to a subpopulation of patients who responded in “open‐label, single arm, phase 2 studies on another immune therapy drug” (pembrolizumab).[xiv] Given this interpretation of the prior studies and the patient’s response, further rounds of nivolumab were approved. Had the patient not had improvements in the tumor’s size following a round of nivolumab, then pembrolizumab’s prior empirical evidence in isolation would have been insufficient, inductively speaking, to justify his continued use of nivolumab.[xv] The case demonstrates a shift in reasoning from the traditional induction to abduction. The phenomenon of ‘cancer improvement’ is considered causally linked to nivolumab and its underlying physiological mechanisms.[xvi] However, “the weakness of abductions is that there may always be some other better, unknown explanation for an effect. The patient may for example belong to a special subgroup that spontaneously improves, or the change may be a placebo effect. This does not mean, however, that abductive inferences cannot be strong or reasonable, in the sense that they can make a conclusion probable.”[xvii] To demonstrate the limitations of relying on the abductive standard in isolation, commentators have pointed out that side effects in precision medicine are hard to rule out as being related to the initial intervention itself unless trends from a group of patients are taken into consideration.[xviii] As artificial intelligence (AI) assists the development of precision medicine for oncology, this uncertainty ought to be taken into consideration. The implementation of AI has been crucial to the development of precision medicine by providing a way to combine large patient datasets or a single patient with a large number of unique variables with machine learning to recommend matches based on statistics and probability of success upon which practitioners can base medical recommendations.[xix] The AI is usually not establishing a causal relationship[xx] – it is predicting. So, as AI bleeds into medical devices, like brain-computer interfaces, the same cautions about using abductive reasoning alone should be carried over. II. Responsive Neurostimulation, AI, and Personalized Medicine Like precision medicine in cancer treatment, computer-brain interface technology similarly focuses on the individual patient through personalized settings. In order to properly expose the intersection of AI, precision medicine, abductive reasoning, and implantable neurotechnologies, the descriptions of adaptive deep brain stimulation systems need to deepen.[xxi] As a broad summary of adaptive deep brain stimulation, to provide a patient with the therapeutic stimulation, a neural signal, typically referred to as a local field potential,[xxii] must first be detected and then interpreted by the device. The main adaptive deep brain stimulation device with premarket approval, the NeuroPace Responsive Neurostimulation system, is used to treat epilepsy by detecting and storing “programmer-defined phenomena.”[xxiii] Providers can optimize the detection settings of the device to align with the patient’s unique electrographic seizures as well as personalize the reacting stimulation’s parameters.[xxiv] The provider adjusts the technology based on trial and error. One day machine learning algorithms will be able to regularly aid this process in myriad ways, such as by identifying the specific stimulation settings a patient may respond to ahead of time based on their electrophysiological signatures.[xxv] Either way, with AI or programmers, adaptive neurostimulation technologies are individualized and therefore operate in line with precision medicine rather than standard treatments based on large clinical trials. Contemporary neurostimulation devices are not usually sophisticated enough to be prominent in AI discussions where the topics of neural networks, deep learning, generative models, and self-attention dominate the conversation. However, implantable high-density electrocorticography arrays (a much more sensitive version than adaptive deep brain stimulation systems use) have been used in combination with neural networks to help patients with neurologic deficits from a prior stroke “speak” through a virtual avatar.[xxvi] In some experimental situations, algorithms are optimizing stimulation parameters with increasing levels of independence.[xxvii] An example of neurostimulation that is analogous to the use of nivolumab in Norway surrounds a patient in the United States who was experiencing both treatment-resistant OCD and temporal lobe epilepsy.[xxviii]Given the refractory nature of her epilepsy, implantation of an adaptive deep brain stimulation system was indicated. As a form of experimental therapy, her treatment-resistant OCD was also indicated for the off-label use of an adaptive deep brain stimulation set-up. Another deep brain stimulation lead, other than the one implanted for epilepsy, was placed in the patient’s right nucleus accumbens and ventral pallidum region given the correlation these nuclei had with OCD symptoms in prior research. Following this, the patient underwent “1) ambulatory, patient-initiated magnet-swipe storage of data during moments of obsessive thoughts; (2) lab-based, naturalistic provocation of OCD-related distress (naturalistic provocation task); and (3) lab-based, VR [virtual reality] provocation of OCD-related distress (VR provocation task).”[xxix] Such signals were used to identify when to deliver the therapeutic stimulation in order to counter the OCD symptoms. Thankfully, following the procedure and calibration the patient exhibited marked improvements in their OCD symptoms and recently shared her results publicly.[xxx] In both cases, there is a similar level of abductive justification for the efficacy of the delivered therapy. In the case study in which the patient was treated with adaptive deep brain stimulation, they at least had their neural activity tested in various settings to determine the optimum parameters for treatment to avoid them being based on guesswork. Additionally, the adaptive deep brain stimulation lead was already placed before the calibration trials were conducted, meaning that the patient had already taken on the bulk of the procedural risk before the efficacy could be determined. Such an efficacy test could have been replicated in the first patient’s cancer treatment, had it been biopsied and tested against the remaining immunotherapies in vitro. Yet, in the case of cancer with few options, one previous dose of a drug that appeared to work on the patient may justify further doses. However, as the Norwegian case presents, corroboration with known responses to a similar drug (from a clinical trial) could be helpful to validate the treatment strategy. (It should be noted that both patients were resigned to these last resort options regardless of the efficacy of treatment.) There are some elements of inductive logic seen with adaptive deep brain stimulation research in general. For example, abductively the focus could be that patient X’s stimulation parameters are different from patient Y’s and patient Z’s. In contrast, when grouped as subjects who obtained personalized stimulation, patients X, Y, and Z demonstrate an inductive aspect to this approach’s safety and/or efficacy. The OCD case holds plenty of abductive characteristics in line with precision medicine’s approach to treating cancer and as more individuals try the method, there will be additional data. With the gradual integration of AI into brain-computer interfaces in the name of efficacy, this reliance on abduction will continue, if not grow, over time. Moving forward, if a responsive deep brain stimulation treatment is novel and individualized (like the dose of nivolumab) and there is some other suggestion of efficacy (like clinical similarities to other patients in the literature), then it may justify insurance coverage for the investigative intervention, absent other unrelated reasons to deny it. III. Ethical Implications and Next Steps While AI’s use in oncology and neurology is not yet as prominent as its use in other fields (e.g., radiology), it appears to be on the horizon for both.[xxxi] AI can be found in both the functioning of the neurotechnologies as well as the implementation of precision medicine. The increasing use of AI may serve to further individualize both oncologic and neurological therapies. Given these implications and the handful of publications cited in this article, it is important to have a nuanced evaluation of how these treatments, which heavily rely on abductive justification, ought to be managed. The just use an abductive approach may be difficult as AI infused precision medicine is further pursued. At baseline, such technology relies on a level of advanced technology literacy among the general public and could exclude populations who lack access to basic technological infrastructure or know-how from participation.[xxxii] Even among nations with adequate infrastructure, as more patients seek out implantable neurotechnologies, which require robust healthcare resources, the market will favor patient populations that can afford this complex care.[xxxiii] If patients already have the means to pay for an initial dose/use of a precision medicine product out of pocket, should insurance providers be required to cover subsequent treatments?[xxxiv] That is, if a first dose of a cancer drug or a deep brain stimulator over its initial battery life is successful, patients may feel justified in having the costs of further treatments covered. The Norwegian patient’s experience implies there is a precedent for the idea that some public insurance companies ought to cover successful cancer therapies, however, insurance companies may not all see themselves as obligated to cover neurotechnologies that rely on personalized settings or that are based on precision/abductive research more than on clinical trials. CONCLUSION The fact that the cases outlined above rely on abductive style of reasoning implies that there may not be as strong a justification for coverage by insurance, as they are both experimental and individualized, when compared to the more traditional large clinical trials in which groups have the same or a standardized protocol (settings/doses). If a study is examining the efficacy of a treatment with a large cohort of patients or with different experimental groups/phases, insurance companies may conclude that the resulting symptom improvements are more likely to be coming from the devices themselves. A preference for inductive justification may take priority when ruling in favor of funding someone’s continued use of an implantable neurostimulator. There are further nuances to this discussion surrounding the classifications of these interventions as research versus clinical care that warrant future exploration, since such a distinction is more of a scale[xxxv] than binary and could have significant impacts on the “right-to-try” approach to experimental therapies in the United States.[xxxvi] Namely, given the inherent limitations of conducting large cohort trials for deep brain stimulation interventions on patients with neuropsychiatric disorders, surgically innovative frameworks that blend abductive and inductive methodologies, like with sham stimulation phases, have traditionally been used.[xxxvii] Similarly, for adaptive brain-computer interface systems, if there are no large clinical trials and instead only publications that demonstrate that something similar worked for someone else, then, in addition to the evidence that the first treatment/dose worked for the patient in question, the balance of reasoning would be valid and arguably justify insurance coverage. As precision approaches to neurotechnology become more common, frameworks for evaluating efficacy will be crucial both for insurance coverage and for clinical decision making. ACKNOWLEDGEMENT This article was originally written as an assignment for Dr. Francis Shen’s “Bioethics & AI” course at Harvard’s Center for Bioethics. I would like to thank Dr. Shen for his comments as well as my colleagues in the Lázaro-Muñoz Lab for their feedback. - [i] Jonathan Kimmelman and Ian Tannock, “The Paradox of Precision Medicine,” Nature Reviews. Clinical Oncology 15, no. 6 (June 2018): 341–42, https://doi.org/10.1038/s41571-018-0016-0. [ii] Henrik Vogt and Bjørn Hofmann, “How Precision Medicine Changes Medical Epistemology: A Formative Case from Norway,” Journal of Evaluation in Clinical Practice 28, no. 6 (December 2022): 1205–12, https://doi.org/10.1111/jep.13649. [iii] David Barrett and Ahtisham Younas, “Induction, Deduction and Abduction,” Evidence-Based Nursing 27, no. 1 (January 1, 2024): 6–7, https://doi.org/10.1136/ebnurs-2023-103873. [iv] Vogt and Hofmann, “How Precision Medicine Changes Medical Epistemology,” 1208. [v] Wireko Andrew Awuah et al., “Bridging Minds and Machines: The Recent Advances of Brain-Computer Interfaces in Neurological and Neurosurgical Applications,” World Neurosurgery, May 22, 2024, S1878-8750(24)00867-2, https://doi.org/10.1016/j.wneu.2024.05.104. [vi] Mark Riedl, “A Very Gentle Introduction to Large Language Models without the Hype,” Medium (blog), May 25, 2023, https://mark-riedl.medium.com/a-very-gentle-introduction-to-large-language-models-without-the-hype-5 f67941fa59e. [vii] David E. Burdette and Barbara E. Swartz, “Chapter 4 - Responsive Neurostimulation,” in Neurostimulation for Epilepsy, ed. Vikram R. Rao (Academic Press, 2023), 97–132, https://doi.org/10.1016/B978-0-323-91702-5.00002-5. [viii] Kimmelman and Tannock, 2018. [ix] Kimmelman and Tannock, 2018. [x] Simon Lohse, “Mapping Uncertainty in Precision Medicine: A Systematic Scoping Review,” Journal of Evaluation in Clinical Practice 29, no. 3 (April 2023): 554–64, https://doi.org/10.1111/jep.13789. [xi] Kimmelman and Tannock, “The Paradox of Precision Medicine.” [xii] Vogt and Hofmann, 1206. [xiii] Vogt and Hofmann, 1206. [xiv] Vogt and Hofmann, 1206. [xv] Vogt and Hofmann, 1207. [xvi] Vogt and Hofmann, 1207. [xvii] Vogt and Hofmann, 1207. [xviii] Vogt and Hofmann, 1210. [xix] Mehar Sahu et al., “Chapter Three - Artificial Intelligence and Machine Learning in Precision Medicine: A Paradigm Shift in Big Data Analysis,” in Progress in Molecular Biology and Translational Science, ed. David B. Teplow, vol. 190, 1 vols., Precision Medicine (Academic Press, 2022), 57–100, https://doi.org/10.1016/bs.pmbts.2022.03.002. [xx] Stefan Feuerriegel et al., “Causal Machine Learning for Predicting Treatment Outcomes,” Nature Medicine 30, no. 4 (April 2024): 958–68, https://doi.org/10.1038/s41591-024-02902-1. [xxi] Sunderland Baker et al., “Ethical Considerations in Closed Loop Deep Brain Stimulation,” Deep Brain Stimulation 3 (October 1, 2023): 8–15, https://doi.org/10.1016/j.jdbs.2023.11.001. [xxii] David Haslacher et al., “AI for Brain-Computer Interfaces,” 2024, 7, https://doi.org/10.1016/bs.dnb.2024.02.003. [xxiii] Burdette and Swartz, “Chapter 4 - Responsive Neurostimulation,” 103–4; “Premarket Approval (PMA),” https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfpma/pma.cfm?id=P100026. [xxiv] Burdette and Swartz, “Chapter 4 - Responsive Neurostimulation,” 104. [xxv] Burdette and Swartz, 126. [xxvi] Sean L. Metzger et al., “A High-Performance Neuroprosthesis for Speech Decoding and Avatar Control,” Nature 620, no. 7976 (August 2023): 1037–46, https://doi.org/10.1038/s41586-023-06443-4. [xxvii] Hao Fang and Yuxiao Yang, “Predictive Neuromodulation of Cingulo-Frontal Neural Dynamics in Major Depressive Disorder Using a Brain-Computer Interface System: A Simulation Study,” Frontiers in Computational Neuroscience 17 (March 6, 2023), https://doi.org/10.3389/fncom.2023.1119685; Mahsa Malekmohammadi et al., “Kinematic Adaptive Deep Brain Stimulation for Resting Tremor in Parkinson’s Disease,” Movement Disorders 31, no. 3 (2016): 426–28, https://doi.org/10.1002/mds.26482. [xxviii] Young-Hoon Nho et al., “Responsive Deep Brain Stimulation Guided by Ventral Striatal Electrophysiology of Obsession Durably Ameliorates Compulsion,” Neuron 0, no. 0 (October 20, 2023), https://doi.org/10.1016/j.neuron.2023.09.034. [xxix] Nho et al. [xxx] Nho et al.; Erik Robinson, “Brain Implant at OHSU Successfully Controls Both Seizures and OCD,” OHSU News, accessed March 3, 2024, https://news.ohsu.edu/2023/10/25/brain-implant-at-ohsu-successfully-controls-both-seizures-and-ocd. [xxxi] Awuah et al., “Bridging Minds and Machines”; Haslacher et al., “AI for Brain-Computer Interfaces.” [xxxii] Awuah et al., “Bridging Minds and Machines.” [xxxiii] Sara Green, Barbara Prainsack, and Maya Sabatello, “The Roots of (in)Equity in Precision Medicine: Gaps in the Discourse,” Personalized Medicine 21, no. 1 (January 2024): 5–9, https://doi.org/10.2217/pme-2023-0097. [xxxiv] Green, Prainsack, and Sabatello, 7. [xxxv] Robyn Bluhm and Kirstin Borgerson, “An Epistemic Argument for Research-Practice Integration in Medicine,” The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine 43, no. 4 (July 9, 2018): 469–84, https://doi.org/10.1093/jmp/jhy009. [xxxvi] Vijay Mahant, “‘Right-to-Try’ Experimental Drugs: An Overview,” Journal of Translational Medicine 18 (June 23, 2020): 253, https://doi.org/10.1186/s12967-020-02427-4. [xxxvii] Michael S. Okun et al., “Deep Brain Stimulation in the Internal Capsule and Nucleus Accumbens Region: Responses Observed during Active and Sham Programming,” Journal of Neurology, Neurosurgery & Psychiatry 78, no. 3 (March 1, 2007): 310–14, https://doi.org/10.1136/jnnp.2006.095315. (shrink)

Dissociative experiences have been associated with diachronic disunity. Yet, this work is in its infancy. Dissociative identity disorder is characterized by different identity states reporting their own relatively continuous sense of self. The degree to which patients in dissociative identity states experience diachronic unity has not been empirically explored. This study examined the degree to which patients in dissociative identity states experienced diachronic unity. Participants were DID adults assessed in adult and child identity states, adults with a psychotic illness, adults (...) from the general population, children from the general population and adults imagining themselves as children. They completed the Diachronic Disunity Scale, the Dissociative Experiences Scale, and the Self-Concept Clarity Scale. Diachronic disunity was not limited to psychiatric groups, but evident to some degree in all adult and child samples. The DID adult sample experienced more dissociation and self-confusion than the psychosis and adult comparison groups, but did not differ on the diachronic measure. DID patients in their child identity states and child comparisons showed disunity and were significantly different from child simulators, who showed relatively more unity. Results suggest that DID patients in either adult or child dissociative identity states, like those in other samples, do not universally experience themselves as having a consistent sense of self over time. (shrink)

BackgroundAs opioid use disorder (OUD) incidence and its associated deaths continue to persist at elevated rates, the development of novel treatment modalities is warranted. Recent strides in this therapeutic area include novel anti-opioid vaccine approaches. This work compares logistical and ethical considerations surrounding currently available interventions for opioid use disorder with an anti-opioid vaccine approach.MethodsThe opinions of student pharmacists and practicing pharmacists assessing knowledge, perceptions, and attitudes toward current and future OUD management strategies were characterized using a staged, multi-modal research (...) approach incorporating a focus group, pilot survey development and refinement, and final survey deployment. Survey responses were assessed using one- and two-way parametric and non-parametric analyses where appropriate, and multi-dimensional matrix profiles were compared using z-tests following an exhaustive combinatorial sum of differences calculation between items within each compared matrix.ResultsFocus group content analysis revealed a high level of agreeableness among participants regarding anti-opioid vaccine technology and a sense of shared ownership regarding solutions to the opioid epidemic at large. Pilot survey results demonstrated subject ability to consider both pragmatic and ethical considerations related to current therapeutics and novel interventions in a single instrument, with high endurance amongst engaged subjects. Access inequality was the most concerning ethical consideration identified for anti-opioid vaccines. Support for anti-opioid vaccine implementation across various clinical scenarios was strongest for voluntary use amongst individuals in recovery, and lowest for mandatory use in at-risk individuals.ConclusionsEthical and logistical concerns surrounding anti-opioid vaccines were largely similar to those for current OUD therapeutics overall. Anti-opioid vaccines were endorsed as helpful potential additions to current OUD therapeutic approaches, particularly for voluntary use in the later stages of clinical progression. (shrink)

This article presents a quantitative way of modeling the interim decisions of clinical trials. While statistical approaches tend to focus on the epistemic aspects of statistical monitoring rules, often overlooking ethical considerations, ethical approaches tend to neglect key epistemic dimension. The proposal is a second-order decision theoretic framework. The framework provides means for retrospective assessment of interim decisions based on a clear and consistent set of criteria that combines both ethical and epistemic considerations. The framework is broadly Bayesian (...) and addresses a fundamental question behind many concerns about clinical trials: What does it take for an interim decision (e.g., whether to stop the trial, or continue) to be a good decision? I provide simulation illustrating the modeling of interim decisions counterfactually using the framework. (shrink)

In recent decades there has been a significant increase in community rehabilitation programs for people with mental health conditions. One such nationwide programs is Amitim in Israel whose mission is to foster the psychosocial rehabilitation of people with mental health conditions in the community. Amitim’s flagship program consists of arts-based groups that integrate participants with mental health conditions and non-clinical community members. To better understand the experiences of participants in these arts-based groups, five focus groups were conducted with (...) participants from 15 integrated arts-based groups. In total, 17 people with mental health conditions and 21 non-clinical community members were interviewed for this qualitative study. Three main themes emerged from the thematic analysis: creation and expression through the arts promote well-being, self-disclosure in a safe space encourages a sense of belonging, and “we are all in the same boat.” The participants underscored the role of creation and expression through the arts in facilitating emotional expression, self-discovery, interpersonal communication, and spiritual elevation. The findings suggest that the facilitators should instill a sense of equality by enabling intergroup acquaintances without labeling participants’ mental health status. Integrated arts-based groups should be accompanied by a mental health professional who can contain and work through complex emotional situations when needed. Arts therapists who specialize in both arts and mental health are particularly suitable for this role. Overall, the interviewees reported that participation in the integrated arts-based groups positively impacted their personal recovery processes by providing a corrective experience of equality as well as enhancing a sense of belonging to the community and social relationships. The participants also reported being empowered by the final artistic event that not only enhanced their sense of visibility, competence, and aspirations for future development in personal, interpersonal, and artistic realms, but also helped to combat both self- and public stigma. (shrink)

ObjectivesMany older adults with visual impairment also have significant hearing loss. The aim was to investigate the effectiveness of a newly developed Dual Sensory Loss protocol on communication and wellbeing of older persons with DSL and their communication partners in the Netherlands and Belgium.MethodsParticipants and their communication partners were randomized in the “DSL-protocol” intervention group or a waiting-list control group. The intervention took 3 to 5 weeks. Occupational therapists focused on optimal use of hearing aids, home-environment modifications and effective (...) communication strategies. The primary outcome was the Communication Strategies domain of the Communication Profile for the Hearing Impaired. Secondary outcomes measured in participants were the Low Vision Quality Of Life Adjustment subscale, the Center for Epidemiological Studies - Depression Scale, De Jong Gierveld Loneliness Scale and the Fatigue Assessment Scale. The Hearing Handicap and Disability Inventory - Reaction of Others subscale and the Care-related Quality of Life - 7 Dimensions was measured in communication partners. Measurements were taken at baseline and 3-month follow-up. Linear mixed models were used to analyze effects between groups over time for every outcome measure.ResultsIntention-to-treat analyses showed a significant effect of the DSL-protocol on the use of verbal strategies in favor of the control group, however, this effect was non-significant after adjustment for confounding. Effect sizes of other outcomes varied between −0.23 [−0.57, 0.12] and 0.30 [−0.05, 0.64]. The LMM showed a significant effect on the HHDI-Reaction of others scale in favor of communication partners in the treatment group, however, the effect did not remain significant at a 0.01 significance level and the effect size was very small and non-significant 0.12, 95% CI [−0.27 to 0.51]. Adjusted analyses did not reveal treatment effects.ConclusionThe DSL-protocol did not clearly contribute to the enhancement of communication and wellbeing in DSL-patients. Possible reasons for the lack of effects are OTs not being comfortable giving advice on communication and psychosocial issues or the short-term treatment and follow-up period. Further study is warranted to find out how the protocol may be adapted or whether it is necessary to involve mental healthcare professionals.Clinical Trial Registrationwww.ClinicalTrials.gov, identifier NTR2843. (shrink)

In clinical practice, decision-making is not performed by individual knowers but by an assemblage of people and instruments in which no one member has full access to every piece of evidence. This is due to decision making teams consisting of members with different kinds of expertise, as well as to organisational and time constraints. This raises important questions for the epistemology of medicine, which is inherently social in this kind of setting, and implies epistemic dependence on others. Trust in (...) these contexts is a highly complex social practice, involving different forms of relationships between trust and reasons for trust: based on reasons, and not based on reasons; based on reasons that are easily accessible to reflection and others that are not. In this paper, we focus on what it means to have reasons to trust colleagues in an established clinical team, collectively supporting or carrying out every day clinical decision-making. We show two important points about these reasons, firstly, they are not sought or given in advance of a situation of epistemic dependence, but are established within these situations; secondly they are implicit in the sense of being contained or nested within other actions that are not directly about trusting another person. The processes of establishing these reasons are directly about accomplishing a task, and indirectly about trusting someone else’s expertise or competence. These processes establish a space of reasons within which what it means to have reasons for trust, or not, gains a meaning and traction in these team-work settings. Based on a qualitative study of decision-making in image assisted diagnosis and treatment of a complex disease called pulmonary hypertension, we show how an intersubjective framework, or ‘space of reasons’ is established through team members forging together a common way of identifying and dealing with evidence. In dealing with images as a central diagnostic tool, this also involves a common way of looking at the images, a common mode or style of perception. These frameworks are developed through many iterations of adjusting and calibrating interpretations in relation to those of others, establishing what counts as evidence, and ranking different kinds of evidence. Implicit trust is at work throughout this process. Trusting the expertise of others in clinical decision-making teams occurs while the members of the team are busy on other tasks, most importantly, building up a framework of common modes of seeing, and common ways of identifying and assessing evidence emerge. It is only in this way that trusting or mistrusting becomes meaningful in these contexts, and that a framework for epistemic dependence is established. (shrink)

In clinical practice, decision-making is not performed by individual knowers but by an assemblage of people and instruments in which no one member has full access to every piece of evidence. This is due to decision making teams consisting of members with different kinds of expertise, as well as to organisational and time constraints. This raises important questions for the epistemology of medicine, which is inherently social in this kind of setting, and implies epistemic dependence on others. Trust in (...) these contexts is a highly complex social practice, involving different forms of relationships between trust and reasons for trust: based on reasons, and not based on reasons; based on reasons that are easily accessible to reflection and others that are not. In this paper, we focus on what it means to have reasons to trust colleagues in an established clinical team, collectively supporting or carrying out every day clinical decision-making. We show two important points about these reasons, firstly, they are not sought or given in advance of a situation of epistemic dependence, but are established within these situations; secondly they are implicit in the sense of being contained or nested within other actions that are not directly about trusting another person. The processes of establishing these reasons are directly about accomplishing a task, and indirectly about trusting someone else’s expertise or competence. These processes establish a space of reasons within which what it means to have reasons for trust, or not, gains a meaning and traction in these team-work settings. Based on a qualitative study of decision-making in image assisted diagnosis and treatment of a complex disease called pulmonary hypertension (PH), we show how an intersubjective framework, or ‘space of reasons’ is established through team members forging together a common way of identifying and dealing with evidence. In dealing with images as a central diagnostic tool, this also involves a common way of looking at the images, a common mode or style of perception. These frameworks are developed through many iterations of adjusting and calibrating interpretations in relation to those of others, establishing what counts as evidence, and ranking different kinds of evidence. Implicit trust is at work throughout this process. Trusting the expertise of others in clinical decision-making teams occurs while the members of the team are busy on other tasks, most importantly, building up a framework of common modes of seeing, and common ways of identifying and assessing evidence emerge. It is only in this way that trusting or mistrusting becomes meaningful in these contexts, and that a framework for epistemic dependence is established. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:"But I Don’t Feel It":Values and Emotions in the Assessment of Competence in Patients With Anorexia NervosaJochen Vollmann (bio)Keywordscompetence assessment, mental capacity, informed consent, psychiatry, anorexia nervosaThe respect of the self-determination of patients obliges physicians to obtain the patient's consent before providing medical treatment. One important condition for a valid informed consent is the patient's competence to make autonomous health care decisions. Therefore, a proper assessment of competence to (...) make health care decisions is crucial particularly in patients with mental disorders (Vollmann 2000; Helmchen and Vollmann 2001). In recent years, several empirical studies on the assessment of competence in patients suffering from different mental disorders have been performed using the MacArthur Competence Assessment Tool-Treatment (MacCAT-T; Grisso and Appelbaum1998). This assessment tool is based on legal standards of competence such as understanding, reasoning, appreciation, and expressing a choice. Since its first publication, the MacCAT-T has been widely accepted as a "gold standard" of competence assessment in the psychiatric literature. In recent years the MacCAT-T has been applied to patients suffering from depression, schizophrenia, dementia, angina pectoris, and normal controls (for overview, see Welie [2001] and Bauer and Vollmann [2002]).Tan and her colleagues (2006) use the MacCAT-T the first time to assess competence to make treatment decisions in patients with anorexia nervosa. Coming from clinical practice, the authors have noticed that the MacCAT-T might not work in this group of patients. Therefore, they use semi-structured interviews in addition to the MacCAT-T to identify aspects of thinking that might be relevant to the issue of competence to refuse treatment. They use grounded theory techniques for a qualitative analysis of the data as well as five brief, self-administered questionnaires to ascertain levels of psychopathology.The results of the study show that anorexia nervosa can have complex and variable effects on concentration, beliefs, and thought processing without affecting the ability to perform well on the MacCAT-T. At the same time, participants also report a change in their value system as well as in their personal identity. The authors argue that the results of their studies suggest that the competence to refuse treatment might be compromised in [End Page 289] people with anorexia nervosa in ways that are not captured by the MacCAT-T. This is an interesting finding in patients with anorexia nervosa, because in all other studies with patients suffering from mental disorders such as dementia, depression, and schizophrenia, the MacCAT-T identified more patients as limited in their competence to make health care decisions in comparison with other methods of competence assessment such as clinical judgment (Vollmann et al. 2003). The authors argue on the basis on their qualitative, semistructured interviews that anorexia nervosa–specific difficulties with a thought process and the change of values are missed by the MacCAT-T.Furthermore, Tan and her associated could not find a relationship between the participants' scores on the psychopathological scales, the MacCAT-T scores, and their difficulties expressed during the qualitative interviews, although the small size of the study precludes statistical analysis. In an earlier study, clinical dementia scales but not neuropsychological testing correlated with formal (MacCAT-T) and clinical assessment of competence. Therefore, psychopathological factors might play a different role in different subgroups of patients suffering from different mental problems. However, the idea of an objective neuropsychological model of competence assessment, again, finds no support in the presented empirical data.The qualitative data from patients with anorexia nervosa underline the problem of the cognitive bias of the MacCAT-T assessment and the illusion of value-free categories. It has been argued that the cognitive focus for the MacCAT-T is in itself a normative convention and that the MacCAT-T is missing the complexity of the process to make health care decisions in real life. Therefore, values and emotions should be considered in addition to cognitive functions in assessing competence to make health care decisions (Breden and Vollmann 2004; see also "Mental capacity" 2004). Although many authors agree that the cognitive approach of capacity assessment is important but not sufficient for the assessment of competence to make health care decisions, it remains an... (shrink)

American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG) recently provided two recommendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium's Pediatrics Working Group compared these recommendations, focusing on operational and ethical issues specific to decision making for children. Content analysis of the statements addresses two issues: (1) how these recommendations characterize and analyze locus of decision making, as well as the risks and benefits of testing, and (2) whether the guidelines conflict (...) or come to different but compatible conclusions because they consider different testing scenarios. These statements differ in ethically significant ways. AAP/ACMG analyzes risks and benefits using best interests of the child and recommends that, absent ameliorative interventions available during childhood, clinicians should generally decline to order testing. Parents authorize focused tests. ACMG analyzes risks and benefits using the interests of the child and other family members and recommends that sequencing results be examined for additional variants that can lead to ameliorative interventions, regardless of age, which laboratories should report to clinicians who should contextualize the results. Parents must accept additional analysis. The ethical arguments in these statements appear to be in tension with each other. (shrink)

Kevin Lynch's books are the classic underpinnings of modern urban planning and design, yet they are only a part of his rich legacy of ideas about human purposes and values in built form. City Sense and City Design brings together Lynch's remaining work, including professional design and planning projects that show how he translated many of his ideas and theories into practice. An invaluable sourcebook of design knowledge, City Sense and City Design completes the record of one of the foremost (...) environmental design theorists of our time and leads to a deeper understanding of his distinctively humanistic philosophy. The editors, both former students of Lynch, provide a cogent summary of his career and of the role he played in shaping and transforming the American urban design profession during the 1950s, the 1960s, and the 1970s. Each of the seven thematic groupings of writings and projects that follow begins with a short introduction explaining their content and their background. The essays in part I focus on the premises of Lynch's work: his novel reading of large-scale built environments and the notion that the design of an urban landscape should be as meaningful and intimate as the natural landscape. In part II, excerpts from Lynch's travel journals reveal his early ideas on how people perceive and interpret their surroundings—ideas that culminated in his seminal work, The Image of the City. This part of the book also presents Lynch's experiments with children and his assessment of environmental-perception research. The examples of both small-scale and large-scale analysis of visual form in part III are followed by three parts on city design. These include Lynch's more theoretical works on complex planning decisions involving both functional (spatial and structural organization) and normative (how the city works in human terms) approaches, articles discussing the principles that guided Lynch's teaching and practice of city design, and descriptions of Lynch's own projects in the Boston area and elsewhere. The book concludes with essays written late in Lynch's career, fantasy pieces describing utopias and offering new design freedoms and scenarios warning of horrifying "cacotopias.". (shrink)

BackgroundKinarm Standard Tests is a suite of upper limb tasks to assess sensory, motor, and cognitive functions, which produces granular performance data that reflect spatial and temporal aspects of behavior. We have previously used principal component analysis to reduce the dimensionality of multivariate data using the Kinarm End-Point Lab. Here, we performed PCA using data from the Kinarm Exoskeleton Lab, and determined agreement of PCA results across EP and EXO platforms in healthy participants. We additionally examined whether further dimensionality (...) reduction was possible by using PCA across behavioral tasks.MethodsHealthy participants were assessed using the Kinarm EXO and EP. Four behavioral tasks were performed that quantified arm sensory and motor function, including position sense [Arm Position Matching ] and three motor tasks [Visually Guided Reaching, Object Hit, and Object Hit and Avoid ]. The number of components to include per task was determined from scree plots and parallel analysis, and rotation type was decided on a per-task basis. To assess agreement, we compared principal components across platforms using distance correlation. We additionally considered inter-task interactions in EXO data by performing PCA across all six behavioral assessments.ResultsBy applying PCA on a per task basis to data collected using the EXO, the number of behavioral parameters were substantially reduced by 58–75% while accounting for 76–87% of the variance. These results compared well to the EP analysis, and we found good-to-excellent agreement values between PCs from the EXO and those from the EP. Finally, we were able to reduce the dimensionality of the EXO data across tasks down to 16 components out of a total of 76 behavioral parameters, which represents a reduction of 79% while accounting for 73% of the total variance.ConclusionPCA of Kinarm robotic assessment appears to capture similar relationships between kinematic features in healthy individuals and is agnostic to the robotic platform used for collection. Further work is needed to investigate the use of PCA-based data reduction for the characterization of neurological deficits in clinical populations. (shrink)

The business ethics education literature provides many in-depth explorations looking at the impact of ethics education and occasionally the influence of gender. Yet, research exploring decision making is primarily focused at the individual level, often omitting important influences that might occur when decision making occurs within a group setting. This paper utilizes a classroom simulation, the Corporate Policy Simulation, in a Business, Government and Society course to assess student group decision-making. We rely on theoretical principles found in Social (...) Role Theory and two philosophical ethics of moral reasoning to assess the impact of gender within a group decision-making environment. Specifically, we assess if males in our study are better able to process financial decisions more effectively than females in our study, and if females in our study tend to process socially responsible or ethical decisions more effectively than males in our study. Our results support the expectations that all-female groups generally are able to make better socially responsible or ethical decisions, whereas there is no significant gender difference among any of the groups when focusing on financially orientated decisions. Possible explanations and the implications of this research on workplace practice and business ethics education are discussed. (shrink)

As recently highlighted, despite a burgeoning field of sensory ethnography, the practices, production, and accountability of the senses in specific social interactional contexts remain sociologically under-explored. To contribute original insights to a literature on the sensuous body in physical–cultural contexts, here we adopt an ethnomethodologically sensitive perspective to focus on the accomplishment, social organization, and accountability of sensoriality in interaction. Exploring instances of the senses at work in social interaction, we utilize data from two ethnographic research projects to (...) investigate the production of running-together and swimming-together by skilled, experienced practitioners. We focus on two interlinked sensory modalities: auditory attunement, and vision and intercorporeality, identified as key dimensions of sensory embodiment and “togethering” in these particular domains. (shrink)

Artistic images, of a universal nature and validated by global culture, are carriers of an emotional potential that can be used for therapeutic purposes in cultural centers as well as in clinical spaces. Esthetic studies reveal the mobilizing power in their contemplation and the capacity to bring out personal stories with healing potential. The general objective of this paper is to design and validate the PROJECTA instrument, consisting of the therapeutic use of artistic images to approach trauma or difficult (...) conditions in therapy, by means of the association between art images and emotions, feelings or states of mind related with a traumatic experience. A mixed approach of investigation with a concurrent triangulation design has been used for the integration of qualitative and quantitative results, where qualitative research outweighs quantitative, but both have been QUAL → quan sequentially developed. The study was carried out in two phases. The first was a systematic review of the literature. The second, divided into five steps, consisted of the validation of artworks and the associated emotions with the participation of students, experts in art therapy, psychologists and educators through focus groups, interviews and an online questionnaire. The analysis techniques were qualitative and quantitative. A set of 220 artistic images linked to emotional states were proposed by experts in education, psychology and art therapy, and validated through an online questionnaire. The respondents included 228 students and professionals and for 64.55% of these images a consensus of over 80% was obtained. These images and their associated emotions were again reviewed by a confirmatory focus group. Finally, 92 artistic works were linked to primary, secondary and tertiary emotions such as love, joy, victory, surprise, balance, sense of humor, anger, sadness, fear, and emptiness. In addition, there are mobilizing images that have not been related to any emotion because of the polysemy of their meanings. It concludes that PROJECTA is a visual art therapy tool that provides professionals with a resource that helps facilitate the identification, expression or demonstration of emotions or feelings related with trauma, and in challenging situations of vulnerability, psychological discomfort or post-traumatic stress. (shrink)

Background‘The Clinical Ethics Advisory Group’ (CEAG) is the clinical ethics support body for Newcastle upon Tyne Hospitals National Health Service Foundation Trust. A significant change in CEAG’s way of working occurred over the past 5 years as a result of Court decisions, increasing public expectations and an increase in CEAG’s paediatric case flow.PurposeReview historical data: (a) as a useful benchmark to look for the early impact of significant service changes and (b) to seek possible reference (‘sentinel’) cases for (...) use with a posited practical (casuistic) case-based reasoning model.MethodsAudit of the minutes of the first 22 years’ meetings was undertaken by the two chairs of CEAG over that period of time.Results223 matters discussed: 86 Trust policy issues; 117 clinical cases (84 adult (32 urgent), 33 child (8 urgent)); 12 CEAG procedural issues and 8 UK Clinical Ethics Network ‘round robin’ cases. The range of topic areas was wide. A broad range of ethical structures were deployed, principlism predominated. Quality was subjectively assessed by each reviewer, but different methods were used. This proved highly concordant between the two reviewers. 47% (105/223) of discussions were ‘excellent’ (*A4C4–A4C4) and 70% (156.5/223) ‘good’ or better (*A4C4–A3C3). By meeting the criteria of ‘excellent’ and ‘prospective’, 92/223 (41%) of matters were deemed potentially suitable as sentinel cases.ConclusionsThe audit provides a rich vein of information. There is demand for CEAG’s services, workload is becoming more complex. Formal funding for such services seems justified. (shrink)

The discourse on the fundamental issues raised by synthetic biology, such as biosafety and biosecurity, intellectual property, environmental consequences and ethical and societal implications, is still open and controversial. This, coupled with the potential and risks the field holds, makes it one of the hottest topics in technology assessment today. How a new technology is perceived by the public influences the manner in which its products and applications will be received. Therefore, it is important to learn how people perceive synthetic (...) biology. This work gathers, integrates and discusses the results of three studies of public perceptions of synthetic biology: an analysis of existing research on how media portray synthetic biology across 13 European countries and in the USA, the Meeting of Young Minds, a public debate between prospective politicians and synthetic biologists in the Netherlands and the experiences of citizen panels and focus groups in Austria, the UK and the USA. The results show that the media are generally positive in their reports on synthetic biology, rather unbalanced in their view of potential benefits and risks, and also heavily influenced by the sources of the stories, namely scientists and stakeholders. Among the prospective Dutch politicians, there were positive expectations as well as very negative ones. Some of these positions are also shared by participants in public dialogue experiments, such as not only the demand for information, transparency and regulation but also a sense of resignation and ineluctability of scientific and technological progress. (shrink)

Introduction: Clinical policies control several aspects of clinical practice, including individual treatment and care, resource management and healthcare professionals’ etiquette. This article presents Clinical Policy Ethics Assessment Tool, an ethical assessment tool for clinical policies that could be used not only by clinical ethics committees but also by policy committees or other relevant groups. Aim: The aim of this study was to find or create a tool to identify ethical issues and/or confirm ethical validity in (...) nursing practice policies, protocols and guidelines. Methodology: The development of Clinical Policy Ethics Assessment Tool involved first a literature review, followed by modification of the Research Protocol Ethics Assessment Tool, which was created to identify research protocols’ ethical issues, and finally, a trial of Clinical Policy Ethics Assessment Tool to ensure its reliability and validity. Ethical consideration: The policies analysed trialling Clinical Policy Ethics Assessment Tool were in the public domain and did not contain any confidential information. Despite that, Clinical Policy Ethics Assessment Tool also had the approval of a research ethics committee. Results: Research Protocol Ethics Assessment Tool was chosen as the template for a Clinical Policy Ethics Assessment Tool, to which several modifications were added to adapt it to work within a nursing practice context. Clinical Policy Ethics Assessment Tool was tested twice, which resulted in a general test–retest reliability coefficient = 0.86, r = 0.84, α1 = 0.817, α2 = 0.824 and interclass correlation coefficient = 0.874. Discussion: Contemporary nursing practice in a developed country is often ruled by clinical policies. The use of Clinical Policy Ethics Assessment Tool could confirm the ethical validity of those clinical practice policies, impacting on nurses’ education, values and quality of care. Conclusion: Clinical Policy Ethics Assessment Tool has the potential to detect ethical issues and facilitate the correction and improvement of clinical policies and guidelines in a structured way. This is especially so as it has shown reliability in detecting issues in clinical policies involving human participants and in encouraging policymakers to consider common ethical dilemmas in nursing practice. (shrink)

Background: Ethics stimulation in nursing education focuses on human, non-technical factors in a clinical reality. Simulation as a teaching method began in the 1930s with flight simulators. In the beginning of the 1990s, simulations developed further in tandem with other technological and digital inventions, including touchscreen and three-dimensional anatomical models. Medical science first used simulation as a pedagogical teaching tool. In nursing education, simulation has been used for approximately a hundred years. Teaching has mainly focused on (...) medical-technical, patient-specific interventions and their management. Objective: The objective of this study was, from a caring science didactic perspective, to deepen the understanding of ethics simulation in nursing education. Design: Qualitative design and explorative, descriptive and hermeneutic approach of an inductive character. Methods: Semi-structured face-to-face interviews in 2016–2017 with six Norwegian nursing students who were encouraged to narrate about their experiences of ethics simulation in nursing education. Ethical considerations: Informed consent was obtained from the participants. Anonymity and confidentiality regarding data material were guaranteed. Results: Interpretation of the nursing students’ narratives resulted in the following meaning units: ethical being and ethos, nursing students’ formation process, bridge-building between theory and clinical practice, and teacher and ethics simulation. Conclusion: Through ethics simulation, nursing students can obtain an increased knowledge and a sense of being able to handle difficult ethical situations. Nursing students’ values, moral actions and ethical value base offer a positive point of departure, for both theoretical and practical ethics teaching, and an awareness of the unique human being, the patient, in clinical reality. The implementation of ethics simulation needs more attention in nursing education. (shrink)

Background Dignity is a central human value supported by nurses’ professional ethics. In previous studies, nurses in clinical practice have experienced that dignity increased their work well-being and pride of work. Dignity is also strictly interweaved to professional identity in the different nursing’ roles, but little is known about dignity among public health nurses and primary care settings. Purpose This study aimed to describe the perceptions of nursing's professional dignity of public health nurses in primary care in Finland. Research (...) design An inductive qualitative descriptive approach with semi-structured focus group interviews was utilised. Participants and research context Twenty-seven Finnish public health nurses were interviewed via eight semi-structured focus group interviews in primary health care settings. Ethical considerations Before data collection, research permissions were obtained from participating health care centres. This type of research in Finland, with competent adult participants, does not require ethical pre-assessment but written and oral informed consent obtained before the interviews. Findings Based on our findings, public health nurses perceived that professional dignity was (1) part of their self-respect, an observed daily value based on their acknowledged competence. Besides, they perceived that (2) service users’ trust in public health nurses was a strong expression of professional dignity, and it could be uncovered when recipients of care utilised their services. In addition, public health nurses experienced that (3) professional dignity was an expression of different intertwined interprofessional and social factors. Discussion and conclusion Professional dignity is simultaneously an essential prerequisite and an outcome of public health nurses’ work. In future, more information would be needed to implement strategies in primary health care to foster nurses’ professional dignity also in international public health arenas. (shrink)

There is an increased focus on fostering integrity in research by through creating an open culture where research integrity dilemmas can be discussed. We describe a pilot intervention study that used Moral Case Deliberation (MCD), a method that originated in clinical ethics support, to discuss research integrity dilemmas with researchers. Our research question was: can moral case deliberation in research groups help to navigate research integrity dilemmas? We performed 10 MCDs with 19 researchers who worked in three different (...) research groups from three different disciplinary fields at a university in the Netherlands. We analyzed the dilemmas and values discussed, sent out a survey questionnaire to assess self-perceived moral competencies, and conducted in-depth interviews. We found research integrity dilemmas pertained to authorship disputes, supervision of junior co-workers, and questionable handling of data. Participants perceived the majority of moral competencies to a higher degree during the MCD when compared to perceiving them in daily practice afterward. Interviewees told us that they felt most comfortable discussing dilemmas among peers with whom they were not closely affiliated. We conclude that MCD sessions could be relevant in navigating research integrity dilemmas, but that revisions to ensure commitment and safety are required. (shrink)

Background: High ethical sensitivity positively affects the quality of nursing care; nevertheless, Chinese nurses’ ethical sensitivity and the factors influencing it have not been described. Research objectives: The purpose of this study was to describe ethical sensitivity and to explore factors influencing it among Chinese-registered nurses, to help nursing administrators improve nurses’ ethical sensitivity, build harmony between nurses and patients, and promote the patients’ health. Research design: This was a descriptive, cross-sectional study. Participants and research context: We recruited 500 nurses (...) from several departments in three tertiary hospitals. The Chinese Moral Sensitivity Questionnaire–Revised version and the Jefferson Scale of Empathy-Health Professionals were used to assess the nurses’ ethical sensitivity and empathy ability, respectively. Fifteen sociodemographic variables were included in the questionnaires. Ethical considerations: Informed consent was obtained from the participants regarding participation and data storage and handling. This program has been examined and supported by the research center of medical ethics and professional ethics of Guilin Medical University. The Approval No. was 2016RWYB04. The whole research process is conducted strictly according to ethical requirements. Results: The valid response rate was 84.40% ( n = 422). The total score of Chinese Moral Sensitivity Questionnaire–Revised was 35.82 ± 8.17. The subscale scores of moral responsibility and strength and sense of moral burden were 21.50 ± 4.91 and 14.33 ± 3.98, respectively. Significant differences were found among age groups, gender, years of working, category of profession, and quality of family communication regarding nurses’ ethical sensitivity ( p < 0.05). Regression analysis showed that the main factors influencing nurses’ ethical sensitivity were gender, years of working, quality of family communication, career satisfaction, and empathic ability. Discussion: Our findings suggest that Chinese nurses’ ethical sensitivity in tertiary hospitals in Guilin is at a medium level. Conclusion: The director of nursing schools and hospitals in China should pay attention to nurses’ ethical sensitivity and should intensify education and training to improve nurses’ ethical sensitivity. Further studies should focus on interventions aimed at improving Chinese nurses’ ethical sensitivity. (shrink)

Telemedicine changes clinical practice and introduces new ways of distributing tasks between physicians and nurses, and particularly the delegation of sensory assessments during remote physical examinations. As nurses become more involved in patient assessment and clinical decision‐making, the quality of physician–nurse collaboration has been recognized as essential to ensure quality patient care. However, few studies have examined physician–nurse interactions during teleconsultations. This article presents the results of an empirical study of nurse–physician communication during remote physical examinations. In (...) partnership with a university‐affiliated hospital in Ontario, Canada, we observed and recorded 10 simulated postsurgical consultations in orthopedics (involving a physician, a patient, and an on‐site nurse) and conducted auto‐confrontation interviews with physicians. The results of the thematic analysis of the interviews informed the selection of consultation sequences for in‐depth interaction analysis. The findings demonstrate the nurse's essential role during remote physical examinations and reveal specific practices accomplished by the nurse to ensure successful nurse–physician collaboration. The interview data shows how physicians view the nurse's role and contributions. The findings contribute to our understanding of the collaborative nature of sensory assessments during remote physical examinations in telemedicine and can inform the development of training programs for professionals focusing on communication skills. Implications for clinical practice are discussed. (shrink)

In this article, we address an existing lacuna in the sociology of the senses, by employing sociological phenomenology to illuminate the under-researched sense of temperature, as lived by a social group for whom water temperature is particularly salient: competitive pool swimmers. The research contributes to a developing ‘sensory sociology’ that highlights the importance of the socio-cultural framing of the senses and ‘sensory work’, but where there remains a dearth of sociological exploration into senses extending beyond the ‘classic five’ (...) sensorium. Drawing on data from a three-year ethnographic study of competitive swimmers in the UK, our analysis explores the rich sensuousities of swimming, and highlights the role of temperature as fundamentally affecting the affordances offered by the aquatic environment. The article contributes original theoretical perspectives to the sociology of the senses and of sport in addressing the ways in which social actors in the aquatic environment interact, both intersubjectively and intercorporeally, as thermal beings. (shrink)

BackgroundAn ethics reflection group is one of a number of ethics support services developed to better handle ethical challenges in healthcare. The aim of this article is to evaluate the significance of ERGs in psychiatric and general hospital departments in Denmark.MethodsThis is a qualitative action research study, including systematic text condensation of 28 individual interviews and 4 focus groups with clinicians, ethics facilitators and ward managers. Short written descriptions of the ethical challenges presented in the ERGs also informed the (...) analysis of significance.ResultsA recurring ethical challenge for clinicians, in a total of 63 cases described and assessed in 3 ethical reflection groups, is to strike a balance between respect for patient autonomy, paternalistic responsibility, professional responsibilities and institutional values. Both in psychiatric and general hospital departments, the study participants report a positive impact of ERG, which can be divided into three categories: 1) Significance for patients, 2) Significance for clinicians, and 3) Significance for ward managers. In wards characterized by short-time patient admissions, the cases assessed were retrospective and the beneficiaries of improved dialogue mainly future patients rather than the patients discussed in the specific ethical challenge presented. In wards with longer admissions, the patients concerned also benefitted from the dialogue in the ERG.ConclusionThis study indicates a positive significance and impact of ERGs; constituting an interdisciplinary learning resource for clinicians, creating significance for themselves, the ward managers and the organization. By introducing specific examples, this study indicates that ERGs have significance for the patients discussed in the specific ethical challenge, but mostly indirectly through learning among clinicians and development of clinical practice. More research is needed to further investigate the impact of ERGs seen from the perspectives of patients and relatives. (shrink)

Table of contentsI1 Proceedings of the 4th World Conference on Research IntegrityConcurrent Sessions:1. Countries' systems and policies to foster research integrityCS01.1 Second time around: Implementing and embedding a review of responsible conduct of research policy and practice in an Australian research-intensive universitySusan Patricia O'BrienCS01.2 Measures to promote research integrity in a university: the case of an Asian universityDanny Chan, Frederick Leung2. Examples of research integrity education programmes in different countriesCS02.1 Development of a state-run “cyber education program of research ethics” in (...) KoreaEun Jung Ko, Jin Sun Kwak, TaeHwan Gwon, Ji Min Lee, Min-Ho LeeCS02.3 Responsible conduct of research teachers’ training courses in Germany: keeping on drilling through hard boards for more RCR teachersHelga Nolte, Michael Gommel, Gerlinde Sponholz3. The research environment and policies to encourage research integrityCS03.1 Challenges and best practices in research integrity: bridging the gap between policy and practiceYordanka Krastev, Yamini Sandiran, Julia Connell, Nicky SolomonCS03.2 The Slovenian initiative for better research: from national activities to global reflectionsUrsa Opara Krasovec, Renata SribarCS03.3 Organizational climate assessments to support research integrity: background of the Survey of Organizational Research Climate and the experience with its use at Michigan State UniversityBrian C. Martinson, Carol R. Thrush, C.K. Gunsalus4. Expressions of concern and retractionsCS04.1 Proposed guidelines for retraction notices and their disseminationIvan Oransky, Adam MarcusCS04.2 Watching retractions: analysis of process and practice, with data from the Wiley retraction archivesChris Graf, Verity Warne, Edward Wates, Sue JoshuaCS04.3 An exploratory content analysis of Expressions of ConcernMiguel RoigCS04.4 An ethics researcher in the retraction processMichael Mumford5. Funders' role in fostering research integrityCS05.1 The Fonds de Recherche du Québec’s institutional rules on the responsible conduct of research: introspection in the funding agency activitiesMylène Deschênes, Catherine Olivier, Raphaëlle Dupras-LeducCS05.2 U.S. Public Health Service funds in an international setting: research integrity and complianceZoë Hammatt, Raju Tamot, Robin Parker, Cynthia Ricard, Loc Nguyen-Khoa, Sandra TitusCS05.3 Analyzing decision making of funders of public research as a case of information asymmetryKarsten Klint JensenCS05.4 Research integrity management: Empirical investigation of academia versus industrySimon Godecharle, Ben Nemery, Kris Dierickx5A: Education: For whom, how, and what?CS05A.1 Research integrity or responsible conduct of research? What do we aim for?Mickey Gjerris, Maud Marion Laird Eriksen, Jeppe Berggren HoejCS05A.2 Teaching and learning about RCR at the same time: a report on Epigeum’s RCR poll questions and other assessment activitiesNicholas H. SteneckCS05A.4 Minding the gap in research ethics education: strategies to assess and improve research competencies in community health workers/promoteresCamille Nebeker, Michael Kalichman, Elizabeth Mejia Booen, Blanca Azucena Pacheco, Rebeca Espinosa Giacinto, Sheila Castaneda6. Country examples of research reward systems and integrityCS06.1 Improving systems to promote responsible research in the Chinese Academy of SciencesDing Li, Qiong Chen, Guoli Zhu, Zhonghe SunCS06.4 Exploring the perception of research integrity amongst public health researchers in IndiaParthasarathi Ganguly, Barna Ganguly7. Education and guidance on research integrity: country differencesCS07.1 From integrity to unity: how research integrity guidance differs across universities in Europe.Noémie Aubert Bonn, Kris Dierickx, Simon GodecharleCS07.2 Can education and training develop research integrity? The spirit of the UNESCO 1974 recommendation and its updatingDaniele Bourcier, Jacques Bordé, Michèle LeducCS07.3 The education and implementation mechanisms of research ethics in Taiwan's higher education: an experience in Chinese web-based curriculum development for responsible conduct of researchChien Chou, Sophia Jui-An PanCS07.4 Educating principal investigators in Swiss research institutions: present and future perspectivesLouis Xaver Tiefenauer8. Measuring and rewarding research productivityCS08.1 Altimpact: how research integrity underpins research impactDaniel Barr, Paul TaylorCS08.2 Publication incentives: just reward or misdirection of funds?Lyn Margaret HornCS08.3 Why Socrates never charged a fee: factors contributing to challenges for research integrity and publication ethicsDeborah Poff9. Plagiarism and falsification: Behaviour and detectionCS09.1 Personality traits predict attitude towards plagiarism of self and others in biomedicine: plagiarism, yes we can?Martina Mavrinac, Gordana Brumini, Mladen PetrovečkiCS09.2 Investigating the concept of and attitudes toward plagiarism for science teachers in Brazil: any challenges for research integrity and policy?Christiane Coelho Santos, Sonia VasconcelosCS09.3 What have we learnt?: The CrossCheck Service from CrossRefRachael LammeyCS09.4 High p-values as a sign of data fabrication/falsificationChris Hartgerink, Marcel van Assen, Jelte Wicherts10. Codes for research integrity and collaborationsCS10.1 Research integrity in cross-border cooperation: a Nordic exampleHanne Silje HaugeCS10.3 Research integrity, research misconduct, and the National Science Foundation's requirement for the responsible conduct of researchAaron MankaCS10.4 A code of conduct for international scientific cooperation: human rights and research integrity in scientific collaborations with international academic and industry partnersRaffael Iturrizaga11. Countries' efforts to establish mentoring and networksCS11.1 ENRIO : a network facilitating common approaches on research integrity in EuropeNicole FoegerCS11.2 Helping junior investigators develop in a resource-limited country: a mentoring program in PeruA. Roxana Lescano, Claudio Lanata, Gissella Vasquez, Leguia Mariana, Marita Silva, Mathew Kasper, Claudia Montero, Daniel Bausch, Andres G LescanoCS11.3 Netherlands Research Integrity Network: the first six monthsFenneke Blom, Lex BouterCS11.4 A South African framework for research ethics and integrity for researchers, postgraduate students, research managers and administratorsLaetus OK Lategan12. Training and education in research integrity at an early career stageCS12.1 Research integrity in curricula for medical studentsGustavo Fitas ManaiaCS12.2 Team-based learning for training in the responsible conduct of research supports ethical decision-makingWayne T. McCormack, William L. Allen, Shane Connelly, Joshua Crites, Jeffrey Engler, Victoria Freedman, Cynthia W. Garvan, Paul Haidet, Joel Hockensmith, William McElroy, Erik Sander, Rebecca Volpe, Michael F. VerderameCS12.4 Research integrity and career prospects of junior researchersSnezana Krstic13. Systems and research environments in institutionsCS13.1 Implementing systems in research institutions to improve quality and reduce riskLouise HandyCS13.2 Creating an institutional environment that supports research integrityDebra Schaller-DemersCS13.3 Ethics and Integrity Development Grants: a mechanism to foster cultures of ethics and integrityPaul Taylor, Daniel BarrCS13.4 A culture of integrity at KU LeuvenInge Lerouge, Gerard Cielen, Liliane Schoofs14. Peer review and its role in research integrityCS14.1 Peer review research across disciplines: transdomain action in the European Cooperation in Science and Technology “New Frontiers of Peer Review ”Ana Marusic, Flaminio SquazzoniCS14.2 Using blinding to reduce bias in peer reviewDavid VauxCS14.3 How to intensify the role of reviewers to promote research integrityKhalid Al-Wazzan, Ibrahim AlorainyCS14.4 Credit where credit’s due: professionalizing and rewarding the role of peer reviewerChris Graf, Verity Warne15. Research ethics and oversight for research integrity: Does it work?CS15.1 The psychology of decision-making in research ethics governance structures: a theory of bounded rationalityNolan O'Brien, Suzanne Guerin, Philip DoddCS15.2 Investigator irregularities: iniquity, ignorance or incompetence?Frank Wells, Catherine BlewettCS15.3 Academic plagiarismFredric M. Litto16. Research integrity in EuropeCS16.1 Whose responsibility is it anyway?: A comparative analysis of core concepts and practice at European research-intensive universities to identify and develop good practices in research integrityItziar De Lecuona, Erika Löfstrom, Katrien MaesCS16.2 Research integrity guidance in European research universitiesKris Dierickx, Noémie Bonn, Simon GodecharleCS16.3 Research Integrity: processes and initiatives in Science Europe member organisationsTony Peatfield, Olivier Boehme, Science Europe Working Group on Research IntegrityCS16.4 Promoting research integrity in Italy: the experience of the Research Ethics and Bioethics Advisory Committee of the Consiglio Nazionale delle Ricerche Cinzia Caporale, Daniele Fanelli17. Training programs for research integrity at different levels of experience and seniorityCS17.1 Meaningful ways to incorporate research integrity and the responsible conduct of research into undergraduate, graduate, postdoctoral and faculty training programsJohn Carfora, Eric Strauss, William LynnCS17.2 "Recognize, respond, champion": Developing a one-day interactive workshop to increase confidence in research integrity issuesDieter De Bruyn, Bracke Nele, Katrien De Gelder, Stefanie Van der BurghtCS17.4 “Train the trainer” on cultural challenges imposed by international research integrity conversations: lessons from a projectJosé Roberto Lapa e Silva, Sonia M. R. Vasconcelos18. Research and societal responsibilityCS18.1 Promoting the societal responsibility of research as an integral part of research integrityHelene IngierdCS18.2 Social responsibility as an ethical imperative for scientists: research, education and service to societyMark FrankelCS18.3 The intertwined nature of social responsibility and hope in scienceDaniel Vasgird, Stephanie BirdCS18.4 Common barriers that impede our ability to create a culture of trustworthiness in the research communityMark Yarborough19. Publication ethicsCS19.1 The authors' forum: A proposed tool to improve practices of journal editors and promote a responsible research environmentIbrahim Alorainy, Khalid Al-WazzanCS19.2 Quantifying research integrity and its impact with text analyticsHarold GarnerCS19.3 A closer look at authorship and publication ethics of multi- and interdisciplinary teamsLisa Campo-Engelstein, Zubin Master, Elise Smith, David Resnik, Bryn Williams-JonesCS19.4 Invisibility of duplicate publications in biomedicineMario Malicki, Ana Utrobicic, Ana Marusic20. The causes of bad and wasteful research: What can we do?CS20.1 From countries to individuals: unravelling the causes of bias and misconduct with multilevel meta-meta-analysisDaniele Fanelli, John PA IoannidisCS20.2 Reducing research waste by integrating systems of oversight and regulationGerben ter Riet, Tom Walley, Lex Marius BouterCS20.3 What are the determinants of selective reporting?: The example of palliative care for non-cancer conditionsJenny van der Steen, Lex BouterCS20.4 Perceptions of plagiarism, self-plagiarism and redundancy in research: preliminary results from a national survey of Brazilian PhDsSonia Vasconcelos, Martha Sorenson, Francisco Prosdocimi, Hatisaburo Masuda, Edson Watanabe, José Carlos Pinto, Marisa Palácios, José Lapa e Silva, Jacqueline Leta, Adalberto Vieyra, André Pinto, Mauricio Sant’Ana, Rosemary Shinkai21. Are there country-specific elements of misconduct?CS21.1 The battle with plagiarism in Russian science: latest developmentsBoris YudinCS21.2 Researchers between ethics and misconduct: A French survey on social representations of misconduct and ethical standards within the scientific communityEtienne Vergès, Anne-Sophie Brun-Wauthier, Géraldine VialCS21.3 Experience from different ways of dealing with research misconduct and promoting research integrity in some Nordic countriesTorkild VintherCS21.4 Are there specifics in German research misconduct and the ways to cope with it?Volker Bähr, Charité22. Research integrity teaching programmes and their challengesCS22.1 Faculty mentors and research integrityMichael Kalichman, Dena PlemmonsCS22.2 Training the next generation of scientists to use principles of research quality assurance to improve data integrity and reliabilityRebecca Lynn Davies, Katrina LaubeCS22.3 Fostering research integrity in a culturally-diverse environmentCynthia Scheopner, John GallandCS22.4 Towards a standard retraction formHervé Maisonneuve, Evelyne Decullier23. Commercial research and integrityCS23.1 The will to commercialize: matters of concern in the cultural economy of return-on-investment researchBrian NobleCS23.2 Quality in drug discovery data reporting: a mission impossible?Anja Gilis, David J. Gallacher, Tom Lavrijssen, Malwitz David, Malini Dasgupta, Hans MolsCS23.3 Instituting a research integrity policy in the context of semi-private-sector funding: an example in the field of occupational health and safetyPaul-Emile Boileau24. The interface of publication ethics and institutional policiesCS24.1 The open access ethical paradox in an open government effortTony SavardCS24.2 How journals and institutions can work together to promote responsible conductEric MahCS24.3 Improving cooperation between journals and research institutions in research integrity casesElizabeth Wager, Sabine Kleinert25. Reproducibility of research and retractionsCS25.1 Promoting transparency in publications to reduce irreproducibilityVeronique Kiermer, Andrew Hufton, Melanie ClyneCS25.2 Retraction notices issued for publications by Latin American authors: what lessons can we learn?Sonia Vasconcelos, Renan Moritz Almeida, Aldo Fontes-Pereira, Fernanda Catelani, Karina RochaCS25.3 A preliminary report of the findings from the Reproducibility Project: Cancer biologyElizabeth Iorns, William Gunn26. Research integrity and specific country initiativesCS26.1 Promoting research integrity at CNRS, FranceMichèle Leduc, Lucienne LetellierCS26.2 In pursuit of compliance: is the tail wagging the dog?Cornelia MalherbeCS26.3 Newly established research integrity policies and practices: oversight systems of Japanese research universitiesTakehito Kamata27. Responsible conduct of research and country guidelinesCS27.1 Incentives or guidelines? Promoting responsible research communication through economic incentives or ethical guidelines?Vidar EnebakkCS27.3 Responsible conduct of research: a view from CanadaLynn PenrodCS27.4 The Danish Code of Conduct for Research Integrity: a national initiative to promote research integrity in DenmarkThomas Nørgaard, Charlotte Elverdam28. Behaviour, trust and honestyCS28.1 The reasons behind non-ethical behaviour in academiaYves FassinCS28.2 The psychological profile of the dishonest scholarCynthia FekkenCS28.3 Considering the implications of Dan Ariely’s keynote speech at the 3rd World Conference on Research Integrity in MontréalJamal Adam, Melissa S. AndersonCS28.4 Two large surveys on psychologists’ views on peer review and replicationJelte WichertsBrett Buttliere29. Reporting and publication bias and how to overcome itCS29.1 Data sharing: Experience at two open-access general medical journalsTrish GrovesCS29.2 Overcoming publication bias and selective reporting: completing the published recordDaniel ShanahanCS29.3 The EQUATOR Network: promoting responsible reporting of health research studiesIveta Simera, Shona Kirtley, Eleana Villanueva, Caroline Struthers, Angela MacCarthy, Douglas Altman30. The research environment and its implications for integrityCS30.1 Ranking of scientists: the Russian experienceElena GrebenshchikovaCS30.4 From cradle to grave: research integrity, research misconduct and cultural shiftsBronwyn Greene, Ted RohrPARTNER SYMPOSIAPartner Symposium AOrganized by EQUATOR Network, Enhancing the Quality and Transparency of Health ResearchP1 Can we trust the medical research literature?: Poor reporting and its consequencesIveta SimeraP2 What can BioMed Central do to improve published research?Daniel Shanahan, Stephanie HarrimanP3 What can a "traditional" journal do to improve published research?Trish GrovesP4 Promoting good reporting practice for reliable and usable research papers: EQUATOR Network, reporting guidelines and other initiativesCaroline StruthersPartner Symposium COrganized by ENRIO, the European Network of Research Integrity OfficersP5 Transparency and independence in research integrity investigations in EuropeKrista Varantola, Helga Nolte, Ursa Opara, Torkild Vinther, Elizabeth Wager, Thomas NørgaardPartner Symposium DOrganized by IEEE, the Institute of Electrical and Electronics EngineersRe-educating our author community: IEEE's approach to bibliometric manipulation, plagiarism, and other inappropriate practicesP6 Dealing with plagiarism in the connected world: An Institute of Electrical and Electronics Engineers perspectiveJon RokneP7 Should evaluation of raises, promotion, and research proposals be tied to bibliometric indictors? What the Institute of Electrical and Electronics Engineers is doing to answer this questionGianluca SettiP8 Recommended practices to ensure conference content qualityGordon MacPhersonPartner Symposium EOrganized by the Committee on Freedom and Responsibility in the Conduct of Science of ICSU, the International Council for ScienceResearch assessment and quality in science: perspectives from international science and policy organisationsP9 Challenges for science and the problems of assessing researchEllen HazelkornP10 Research assessment and science policy developmentCarthage SmithP11 Research integrity in South Africa: the value of procedures and processes to global positioningRobert H. McLaughlinP12 Rewards, careers and integrity: perspectives of young scientists from around the worldTatiana Duque MartinsPartner Symposium FOrganized by the Online Resource Center for Ethics Education in Engineering and Science / Center for Engineering, Ethics, and Society of the National Academy of EngineeringP13 Research misconduct: conceptions and policy solutionsTetsuya Tanimoto, Nicholas Steneck, Daniele Fanelli, Ragnvald Kalleberg, Tajammul HusseinPartner Symposium HOrganized by ORI, the Office of Research Integrity; Universitas 21; and the Asia Pacific Research Integrity NetworkP14 International integrity networks: working together to ensure research integrityPing Sun, Ovid Tzeng, Krista Varantola, Susan ZimmermanPartner Symposium IOrganized by COPE, the Committee on Publication EthicsPublication without borders: Ethical challenges in a globalized worldP15 Authorship: credit and responsibility, including issues in large and interdisciplinary studiesRosemary ShinkaiPartner Symposium JOrganized by CITI, the Cooperative Institutional Training InitiativeExperiences on research integrity educational programs in Colombia, Costa Rica and PeruP16 Experiences in PeruRoxana LescanoP17 Experiences in Costa RicaElizabeth HeitmanP18 Experiences in ColumbiaMaria Andrea Rocio del Pilar Contreras NietoPoster Session B: Education, training, promotion and policyPT.01 The missing role of journal editors in promoting responsible researchIbrahim Alorainy, Khalid Al-WazzanPT.02 Honorary authorship in Taiwan: why and who should be in charge?Chien Chou, Sophia Jui-An PanPT.03 Authorship and citation manipulation in academic researchEric Fong, Al WilhitePT.04 Open peer review of research submission at medical journals: experience at BMJ Open and The BMJTrish GrovesPT.05 Exercising authorship: claiming rewards, practicing integrityDésirée Motta-RothPT.07 Medical scientists' views on publication culture: a focus group studyJoeri Tijdink, Yvo SmuldersPoster Session B: Education, training, promotion and policyPT.09 Ethical challenges in post-graduate supervisionLaetus OK LateganPT.10 The effects of viable ethics instruction on international studentsMichael Mumford, Logan Steele, Logan Watts, James Johnson, Shane Connelly, Lee WilliamsPT.11 Does language reflect the quality of research?Gerben ter Riet, Sufia Amini, Lotty Hooft, Halil KilicogluPT.12 Integrity complaints as a strategic tool in policy decision conflictsJanneke van Seters, Herman Eijsackers, Fons Voragen, Akke van der Zijpp and Frans BromPoster Session C: Ethics and integrity intersectionsPT.14 Regulations of informed consent: university-supported research processes and pitfalls in implementationBadaruddin Abbasi, Naif Nasser AlmasoudPT.15 A review of equipoise as a requirement in clinical trialsAdri LabuschagnePT.16 The Research Ethics Library: online resource for research ethics educationJohanne Severinsen, Espen EnghPT.17 Research integrity: the view from King Abdulaziz City for Science and TechnologyDaham Ismail AlaniPT. 18 Meeting global challenges in high-impact publications and research integrity: the case of the Malaysian Palm Oil BoardHJ. Kamaruzaman JusoffPT.19 University faculty perceptions of research practices and misconductAnita Gordon, Helen C. HartonPoster Session D: International perspectivesPT.21 The Commission for Scientific Integrity as a response to research fraudDieter De Bruyn, Stefanie Van der BurghtPT. 22 Are notions of the responsible conduct of research associated with compliance with requirements for research on humans in different disciplinary traditions in Brazil?Karina de Albuquerque Rocha, Sonia Maria Ramos de VasconcelosPT.23 Creating an environment that promotes research integrity: an institutional model of Malawi Liverpool Welcome TrustLimbanazo MatandikaPT.24 How do science policies in Brazil influence user-engaged ecological research?Aline Carolina de Oliveira Machado Prata, Mark William NeffPoster Session E: Perspectives on misconductPT.26 What “causes” scientific misconduct?: Testing major hypotheses by comparing corrected and retracted papersDaniele Fanelli, Rodrigo Costas, Vincent LarivièrePT.27 Perception of academic plagiarism among dentistry studentsDouglas Leonardo Gomes Filho, Diego Oliveira GuedesPT. 28 a few bad apples?: Prevalence, patterns and attitudes towards scientific misconduct among doctoral students at a German university hospitalVolker Bähr, Niklas Keller, Markus Feufel, Nikolas OffenhauserPT. 29 Analysis of retraction notices published by BioMed CentralMaria K. Kowalczuk, Elizabeth C. MoylanPT.31 "He did it" doesn't work: data security, incidents and partnersKatie SpeanburgPoster Session F: Views from the disciplinesPT.32 Robust procedures: a key to generating quality results in drug discoveryMalini Dasgupta, Mariusz Lubomirski, Tom Lavrijssen, David Malwitz, David Gallacher, Anja GillisPT.33 Health promotion: criteria for the design and the integrity of a research projectMaria Betânia de Freitas Marques, Laressa Lima Amâncio, Raphaela Dias Fernandes, Oliveira Patrocínio, and Cláudia Maria Correia Borges RechPT.34 Integrity of academic work from the perspective of students graduating in pharmacy: a brief research studyMaria Betânia de Freitas Marques, Cláudia Maria Correia Borges Rech, Adriana Nascimento SousaPT.35 Research integrity promotion in the Epidemiology and Health Services, the journal of the Brazilian Unified Health SystemLeila Posenato GarciaPT.36 When are clinical trials registered? An analysis of prospective versus retrospective registration of clinical trials published in the BioMed Central series, UKStephanie Harriman, Jigisha PatelPT.37 Maximizing welfare while promoting innovation in drug developmentFarida LadaOther posters that will be displayed but not presented orally:PT.38 Geoethics and the debate on research integrity in geosciencesGiuseppe Di Capua, Silvia PeppoloniPT.39 Introducing the Professionalism and Integrity in Research Program James M. DuBois, John Chibnall, Jillon Van der WallPT.40 Validation of the professional decision-making in research measureJames M. DuBois, John Chibnall, Jillon Van der Wall, Raymond TaitPT.41 General guidelines for research ethicsJacob HolenPT. 42 A national forum for research ethicsAdele Flakke Johannessen, Torunn EllefsenPT.43 Evaluation of integrity in coursework: an approach from the perspective of the higher education professorClaudia Rech, Adriana Sousa, Maria Betânia de Freitas MarquesPT.44 Principles of geoethics and research integrity applied to the European Multidisciplinary Seafloor and Water Column Observatory, a large-scale European environmental research infrastructureSilvia Peppoloni, Giuseppe Di Capua, Laura BeranzoliF1 Focus track on improving research systems: the role of fundersPaulo S.L. Beirão, Susan ZimmermanF2 Focus track on improving research systems: the role of countriesSabine Kleinert, Ana MarusicF3 Focus track on improving research systems: the role of institutionsMelissa S. Anderson, Lex Bouter. (shrink)

The orthodox view in analytical film theory is that the difference between fiction and nonfiction is anchored in communicative practice. Whereas the creator of nonfiction can be seen as asserting something as true, the creator of fiction merely asks of its spectators that they imagine the work’s content. This could be labelled an intention-response theory of the difference between fiction and nonfiction. While watching Supersize Me I am as a spectator very much aware of director Morgan Spurlock making an argument (...) about the state of affairs in the real world, and I assess the truth-value of this argument. While watching Avatar I imagine that there is a population of humanoids, the Na’vi, on the planet Pandora, fighting for survival: I assess what is fictional (true in the fiction). -/- However, when it comes to truth claims the difference between the many varieties of fiction and nonfiction is not as straightforward as this. For example, one may argue that the spectator can and commonly does perceive even a prototypical fiction film such as Avatar as laying claims to truth in the sense that she may read the film allegorically, and search for the filmmaker’s agenda. Is not Avatar a critique of Western imperialism, and our non-environmental lifestyle, for example? It is not fully accurate to claim that fiction film does not make truth claims – there are several ways in which fiction films are taken as asserting something that the spectator is asked to believe. -/- Among the many difficult issues this counterargument raises, I will concentrate on only one here, namely on the case of social realism in fiction. Social realism arguably asserts that something is true in our actual world and asks its spectators to believe this – although works of social realism are also classified as fiction. The solution is not to dismiss the basic theory, but to make finer distinctions. I argue that one difference between prototypical nonfiction and social realist fiction is that nonfiction asserts that its contents (characters and events) are true as tokens, e.g., this person experienced this. As fiction, a work of social realism calls for imagining. However, such a work also asserts that its contents are true as types, e.g., these types of persons experience these types of events. -/- I argue that this can explain what the difference is between the truth claims made in the nonfictional The Corner and The Wire as social realist fiction, respectively. Creator David Simon emphasizes that The Wire’s portrayal of Baltimore city life is true, and is to be taken as making assertions about American inner city decay. The background for the show is found in Simons and co-author Ed Burns’s nonfiction book The Corner, written after extensive ethnographic observation of a group of drug dealers in Baltimore. Their intention to assert something as true is reflected in the academic reception of the series, in which it is celebrated for its authenticity and realism. Studying the style, narration and content of The Wire carefully further illustrates how these truth-telling intentions are communicated to the spectator. Its documentary-like style mimics observational nonfiction film, and its cyclical narrative structure, focused on an ensemble cast of characters typically marginalized in mainstream popular culture by virtue of status and ethnicity, is typical of works of social realism. The spectator picks up on these clues and expects a certain accuracy and authenticity in the type representations in The Wire, although she is aware that the depictions of these token characters and these token events are not true, but only to be imagined. -/- In conclusion, the theory presented in this paper may not be able to neatly categorize any given film as either fiction or nonfiction, as some nonfiction films make type claims and some fictions make token claims. I do not claim that the difference between type and token claims is sufficient for categorizing any given work as either fiction or nonfiction. More work is needed in order to categorize and describe the various types of fiction and nonfiction, paying special attention to the particular blend of imagining and belief prescribed by each, as evident in what the creators say about their intentions, textual features of the work itself, and critical reception. However, difficult borderline cases such as social realism in fiction do not collapse the distinction between fiction and nonfiction, as demarcated by the intention-response theory. Rather, such difficult cases should compel us to investigate more closely the communicative intentions and conventions at work. In the case of social realism, it is still correct to say that the spectator merely imagines that these fictional characters experience various events; however, she also perceives a double invitation to believe that these events and experiences are typical, and as such representative, of a larger group about which the work intends to assert something as true. (shrink)

This paper explores the conduct of performance appraisals of nurses in a New Zealand hospital, and how fairness is perceived in such appraisals. In the health sector, performance appraisals of medical staff play a key role in implementing clinical governance, which, in turn, is critical to containing health care costs and ensuring quality patient care. Effective appraisals depend on employees perceiving their own appraisals to be fair both in terms of procedure and interaction with their respective appraiser. We examine (...) qualitative data from interviews and focus groups, involving 22 nurses in a single department, to determine whether perceived injustices impact on the effective implementation of the appraisal system. Our results suggest that particular issues had been causing some sense of injustice, and most of these were procedural. Potential solutions focus on greater formalisation of the performance appraisal process, and more training for appraisers and appraisees. (shrink)

Some sensory modalities, such as sight, touch and audition, are arguably spatial, and one way to understand these spatial senses is to investigate spatial representations in them. Here I focus on a specific element in this area— the interplay between perspectival variation and spatial constancy—and discuss recent interdisciplinary works on this topic. With these relevant experimental works, we will see clearly how traditional controversies in philosophy, for example, whether we perceive perspectival shapes as well as objective shapes, and (...) whether any sensory field should be postulated in senses other than vision, can benefit from considerations in empirical sciences. (shrink)

Background: Moral sensitivity is the first step towards ethical decision-making. This sensitivity should form a basic attitude in healthcare team members, particularly nurses, toward providing effective and ethical care. This is highlighted in intensive care units (ICUs) where close attention should be paid to patient rights and moral or ethical decision-making. Objective: The present study aimed at determining and comparing the effect of written simulation and computer simulation of a virtual patient on the development of moral sensitivity of (...) ICU nurses. Research design: Randomized controlled trial with one control arm and two experimental arms. Participants and content: This study involved 204 ICU nurses working in hospitals affiliated to Tehran University of Medical Sciences, Tehran, Iran, from 2019 to 2021 using a random allocation method. The participants were allocated to three groups comprising virtual patient computer simulation, written simulation, and the no simulation control group. After training based on a Patient Rights Charter, five scenarios, with themes reflecting the clauses of the Patient’s Rights Charter, were written as a computer program and text for the computer simulation and written simulation groups, respectively. Finally, nurses' moral sensitivity was assessed using the Lützén moral sensitivity questionnaire as pre- and post-tests (immediately and 2 months after the intervention). Ethical considerations: Ethical permission was obtained for the study. All the participants signed the informed consent before the study onset. Results: The study results showed a significant difference in moral sensitivity among the three groups before the intervention ( p = 0.003). Immediately after the intervention compared to pre-intervention, the three groups showed no significant differences in this regard ( p = 0.056), however a significant difference among the three groups was found 2 months post-intervention ( p < 0.001). (shrink)

Multimodal neuroimaging provides a rich source of data for identifying brain regions associated with disease progression and aging. However, present studies still typically analyze modalities separately or aggregate voxel-wise measurements and analyses to the structural level, thus reducing statistical power. As a central example, previous works have used two quantitative MRI parameters—R2* and quantitative susceptibility —to study changes in iron associated with aging in healthy and multiple sclerosis subjects, but failed to simultaneously account for both. In this article, we propose (...) a unified framework that combines information from multiple imaging modalities and regularizes estimates for increased interpretability, generalizability, and stability. Our work focuses on joint region detection problems where overlap between effect supports across modalities is encouraged but not strictly enforced. To achieve this, we combine L1, total variation, and L2 group lasso penalties. While the TV penalty encourages geometric regularization by controlling estimate variability and support boundary geometry, the group lasso penalty accounts for similarities in the support between imaging modalities. We address the computational difficulty in this regularization scheme with an alternating direction method of multipliers optimizer. In a neuroimaging application, we compare our method against independent sparse and joint sparse models using a dataset of R2* and QS maps derived from MRI scans of 113 healthy controls: our method produces clinically-interpretable regions where specific iron changes are associated with healthy aging. Together with results across multiple simulation studies, we conclude that our approach identifies regions that are more strongly associated with the variable of interest, more accurate, and more stable with respect to training data variability. This work makes progress toward a stable and interpretable multimodal imaging analysis framework for studying disease-related changes in brain structure and can be extended for classification and disease prediction tasks. (shrink)

Philosophers and scientists have studied sensory perception and, in particular, vision for many years. Increasingly, however, they have become interested in the nonvisual senses in greater detail and the problem of individuating the senses in a more general way. The Aristotelian view is that there are only five external senses—smell, taste, hearing, touch, and vision. This has, by many counts, been extended to include internal senses, such as balance, proprioception, and kinesthesis; pain; and potentially other human and nonhuman senses. (...) This “multisensory turn” has been driven partly by developments in contemporary psychology and neuroscience, which have revealed a host of complex interrelations and interactions between sensory modalities previously thought to be distinct. Contrasts between modalities and other crossmodal phenomena, including multisensory integration, synesthesia, and sensory substitution, have also begun to receive more attention in a burgeoning scientific and philosophical literature on multisensory perception and other crossmodal effects. This article focuses on recent empirically informed contributions to the philosophy of perception, as well as key scientific works that provide important background information and insights into the nature of the senses and sensory perception. Indeed, one of the lessons of the multisensory turn, and of contemporary philosophy of mind more generally, is that philosophers ignore this body of empirical research at their peril because many human and animal senses turn out to be richer and more complex than philosophers and scientists had previously imagined, making this a fruitful area for interdisciplinary interaction and research. (shrink)

In the last decades, the evidence-based approach has become dominant in the biomedical sciences. Its influence has extended from clinical practice to other areas such as drug regulation and public health. Nonetheless, given the limitations of the evidence-based framework, a more pluralist approach towards evidence has been demanded. In this sense, evidential pluralism holds that evidence of mechanisms should complement statistical evidence. This paper aims to explore and discuss the prospects of evidential pluralism in public health. First, we will (...) analyse the evidential standards of the International Agency for Research on Cancer. Those standards are argued to be in line with the pluralist approach. Second, we will consider the main challenges for gathering evidence of mechanisms in public health. For that purpose, diverse types of evidence of mechanisms will be identified. And third, we will assess the role of agent-based models as mechanistic studies. Based on a case study, we will discuss whether agent-based models can provide evidence of mechanisms and mitigate the abovementioned challenges. (shrink)

This paper highlights the significance of sensory studies and psychophysical investigations of the relations between psychic and physical phenomena for our understanding of the development of the physics discipline, by examining aspects of research on sense perception, physiology, esthetics, and psychology in the work of Gustav Theodor Fechner, Hermann von Helmholtz, Wilhelm Wundt, and Ernst Mach between 1860 and 1871. It complements previous approaches oriented around research on vision, Fechner’s psychophysics, or the founding of experimental psychology, by charting Mach’s (...) engagement with psychophysical experiments in particular. Examining Mach’s study of the senses and esthetics, his changing attitudes toward the mechanical worldview and atomism, and his articulation of comparative understandings of sensual, geometrical, and physical spaces helps set Mach’s emerging epistemological views in the context of his teaching and research. Mach complemented an analytic strategy focused on parallel psychic and physical dimensions of sensation, with a synthetic comparative approach – building analogies between the retina, the individual, and social life, and moving between abstract and sensual spaces. An examination of the broadly based critique that Mach articulated in his 1871 lecture on the conservation of work shows how his historical approach helped Mach cast what he now saw as a narrowly limiting emphasis on mechanics as a phase yet to be overcome. (shrink)

While much work has been done on improving undergraduate education in bioethics, particularly in medicine, less has been said about continuing education of health care workers, particularly non-medical and nursing personnel. Hospitals bring together a variety of professional and non-professional groups in the place where clinical dilemmas are daily events, and would seem ideal places to conduct an ongoing bioethics dialogue. Yet evidence that this is being achieved is sparse.The European Hospital (-Based) Bioethics Program (EHBP) brings together both current (...) and aspirant members of the EU as partners in a project that aims to assess the current situation with regard to bioethics education in hospitals, identify shortfalls, and address these. In order to achieve the first objective of the EHBP a survey of the current training activities (focused on activities in hospitals) in clinical bioethics in Europe was carried out. The results are presented in this paper, along with a discussion about the implications for the EHBP to address these issues. (shrink)

Clinical ethics committees (CECs) are well established in North America where they are known as hospital or health care ethics committees. Similar groups and other kinds of clinical ethics support are now developing in Europe. This supplement to the Journal of Medical Ethics provides an overview of the issues arising from the provision of clinical ethics support services, and clinical ethics committees in particular. Its primary focus is the UK but contributors from North America and (...) continental Europe provide an international perspective. Clinical ethics committees are an emerging feature of UK health care. This supplement's first paper provides an overview of the current provision of clinical ethics support in the UK and an assessment of the way in which CECs are developing. Personal perspectives from five UK CECs provide insight into some of the issues that those considering setting up a committee in their …. (shrink)

From the outside, our senses are spatially integrated in our body in manifestly different ways. This paper starts from the suggestion that the philosophical formulation of the problem of spatial perception, as it flows from the modern opposition of mind and world, is partly responsible for the fact that philosophers have often explicitly disregarded the spatial nature of the senses themselves. An indirect consequence is that much philosophical work focuses on how the senses can – or cannot – perceive the (...) same spatial features of objects in the same way, while disregarding the massive differences in performance among the senses. This paper explores the ways in which the spatial integration of our senses determines what each of our senses excels in, and hence what they contribute to our spatial relation to a physical environment. By juxtaposing descriptive analyses of a variety of selected cases, the paper gives priority to how various aspects of the world appear to us in order to obtain insight into the meaning of spatiality for different senses. (shrink)

Enrollers play a critical yet often overlooked role in clinical research, particularly in informed consent processes. Study retention may depend in part on how complex information is conveyed to potential participants. This qualitative study aimed to assess communicative barriers during consent and enrolment in two South African TB/HIV clinical studies. In particular, we compared our own perceptions of potential challenges to consent with that of thirteen enrollers, gained via reflective journaling and focus group discussions. Some overlap of (...) identified challenges was evident, including terminology, jargon and consent document format. However there were mismatches to identified challenges. Enrollers provided further insights into potential challenges to consent, in particular, blood withdrawal, discussion of sexual issues and misunderstanding of study participation. Enrollers also reported feeling ill‐equipped to provide counselling when participants became distressed. We offer several recommendations for strengthening the inclusion of enrollers in the development of clinical research protocols and consent documents. (shrink)

Obsessive–compulsive disorder is a debilitating mental health disorder that can easily become a treatment-resistant condition. Although effective therapies exist, only about half of the patients seem to benefit from them when we consider treatment refusal, dropout rates, and residual symptoms. Thus, providing effective augmentation to standard therapies could improve existing treatments. Group compassion-focused interventions have shown promise for reducing depression, anxiety, and avoidance related to various clinical problems, but this approach has never been evaluated for OCD individuals. However, cultivating (...) compassion for self and others seems crucial for OCD patients, given the accumulating research suggesting that fear of guilt, along with isolation and self-criticism, can strongly contribute to the development and maintenance of OCD. The primary aim of this pilot study was to evaluate the acceptability, tolerability, and effectiveness of an 8-week group compassion-focused intervention for reducing OCD symptoms, depression, fear of guilt and self-criticism, and increasing common humanity and compassionate self-reassuring skills in treatment-resistant OCD patients. Using a multiple baseline experimental design, the intervention was evaluated in a sample of OCD patients who had completed at least 6 months of CBT treatment for OCD, but who continued to suffer from significant symptoms. Participants were randomized to different baseline assessment lengths; they then received 8 weekly, 120-min group sessions of compassion-focused therapy for OCD, and then were tested again at post-treatment and at 1 month follow up. Despite the adverse external circumstances, by the end of treatment, all participants demonstrated reliable decreases in OCD symptoms, and these improvements were maintained at 4-week follow-up for seven of eight participants. The intervention was also associated with improvements in fear of guilt, self-criticism, and self-reassurance, but less consistent improvements in depression and common humanity. Participants reported high levels of acceptability of and satisfaction with the intervention. Results suggest that the intervention may be beneficial as either a stand-alone treatment or as an augmentation to other treatments. (shrink)

Clinical ethics consultants often confront the most difficult clinical encounters, typically in the setting of chronically critically ill patients and surrogate decision makers. These encounters require not only analytical skills but interpersonal skills as well. In this article, I focus on an interpersonal skill absent from the American Society for Bioethics and the Humanities Task Force’s Core Competencies for Healthcare Ethics Consultation. I introduce the psychoanalytic concept of transference and argue that knowledge and use of transference phenomena (...) are sometimes indispensable for ethics consultation with surrogate decision makers. For solicitation of moral views, disclosure of relevant beliefs and values, and identification of the central ethical question—essential to assessment and analysis—cannot at times begin without recognition and working through of transference. (shrink)

Driving behaviours and fitness to drive have been assessed using different tools over time: standardized neuropsychological, on-road and driving simulation testing. Nowadays, the great variability of topics related to driving simulation has elicited a high number of reviews. The present work aims to perform a scientometric analysis on driving simulation reviews and to propose a selective review of reviews focusing on critical issues related to validity and fidelity. A scientometric analysis of driving simulation reviews published from (...) 1988 to 2019 was conducted. Bibliographic data from 298 reviews were extracted from Scopus and WoS. Performance analysis was conducted to investigate most prolific Countries, Journals, Institutes and Authors. A cluster analysis on authors’ keywords was performed to identify relevant associations between different research topics. Based on reviews extracted from cluster analysis, a selective review of reviews was conducted to answer questions regarding validity, fidelity and critical issues. USA and Germany are the first two Countries for number of driving simulation reviews. USA is the leading Country with 5 Institutes in the top-ten. Top Authors wrote from 3 to 7 reviews each and belong to Institutes located in North America and Europe. Cluster analysis identified three clusters and eight keywords. The selective review of reviews showed a substantial agreement for supporting validity of driving simulation with respect to neuropsychological and on-road testing, while for fidelity with respect to real-world driving experience a blurred representation emerged. The most relevant critical issues were the a) lack of a common set of standards, b) phenomenon of simulation sickness, c) need for psychometric properties, lack of studies investigating d) predictive validity with respect to collision rates and e) ecological validity. Driving simulation represent a cross-cutting topic in scientific literature on driving, and there are several evidences for considering it as a valid alternative to neuropsychological and on-road testing. Further research efforts could be aimed at establishing a consensus statement for protocols assessing fitness to drive, in order to a) use standardized systems, b) compare systematically driving simulators with regard to their validity and fidelity, and c) employ shared criteria for conducting studies in a given sub-topic. (shrink)

Background Moral distress is a serious problem for health care personnel. Surveys, individual interviews, and focus groups may not capture all of the effects of, and responses to, moral distress. Therefore, we used a new participatory action research approach—moral conflict assessment (MCA)—to characterize moral distress and to facilitate the development of interventions for this problem. Aim To characterize moral distress by analyzing responses of intensive care unit (ICU) personnel who participated in the MCA process. Research Design In this qualitative (...) study, we invited all ICU personnel at 3 urban hospitals to participate in individual or group sessions using the 8-step MCA tool. These sessions were facilitated by either a clinical ethicist or a counseling psychologist who was trained in this process. During each session, one of the researchers took notes and prepared a report for each MCA which were analyzed using qualitative content analysis. Participants and Research Context A total of 24 participants took part in 15 sessions, individually or in groups; 14 were nurses and nurse leaders, 2 were physicians, and 8 were other health professionals. Ethical Considerations This study was approved by the Providence Health Care/University of British Columbia Behavioural Research Ethics Board. Each participant provided written informed consent. Results The main causes of moral distress related to goals of care, communication, teamwork, respect for patient’s preferences, and the managerial system. Suggested solutions included communication strategies and educational activities for health care providers, patients, family members, and others about teamwork, advance directives, and end-of-life care. Participants acknowledged that using the MCA process helped them to reflect on their own thoughts and use their moral agency to turn a distressing situation into a learning and improvement opportunity. Conclusions Using the MCA tool helped participants to characterize their moral distress in a systematic way, and to arrive at new potential solutions. (shrink)

Alexithymia is a dimensional trait characterized by difficulties identifying and describing feelings and an externally oriented thinking (EOT) style. Here, we explored interrelationships between alexithymia and measures assessing how individuals process and regulate their responses to environmental and body-based cues. Young adults (N= 201) completed self-report questionnaires assessing alexithymia, sensory processing sensitivity (SPS), interoceptive accuracy (IA), sensory processing styles, and current levels of depression, anxiety, and stress. Whereas EOT was related to low orienting sensitivity, problems with emotional appraisal (...) (difficulties identifying feelings/difficulties describing feelings) were related to heightened sensory sensitivity. In addition, features of SPS improved the prediction of alexithymia above and beyond that accounted for by IA. We suggest that EOT is linked to problems maintaining a representation of one’s emotions in working memory and that low IA and problems with emotional appraisal are linked to atypicalities in sensory processing that may impact embodiment. A latent profile analysis revealed five classes of individuals distinguished by the relative strength of different alexithymic traits and by differences in IA and sensory processing styles. The classes identified included two lexithymic, one modal, and two alexithymic groups, showing different susceptibilities to SPS. Overall, our findings lend support to the view that alexithymia is associated with atypicalities in both bottom–up and top–down processes that impact emotion processing and regulation. They also raise the possibility that individuals with different alexithymia subtypes may differ with regard to a range of factors, including not only SPS but also early life experiences, mental health outcomes, and susceptibility to various personality disorders. (shrink)

AbstractAdvances in precision agriculture, driven by big data technologies and machine learning algorithms can transform agriculture by enhancing crop and livestock productivity and supporting faster and more accurate on and off-farm decision making. However, little is known about how PA can influence farmers’ sense of self, their skills and competencies, and the meanings that farmers ascribe to farming. This study is animated by scholarly commitment to social identity research, and draws from socio-cyber-physical systems research, domestication theory, and activity theory. This (...) conceptualization of PA within these theoretical perspectives helps to render visible how big agricultural data and machine learning algorithms can affect meaning, doing, and being for US farmers. Through analysis of data from six focus group discussions and follow-up surveys with stakeholders across the PA value chain, this paper shows that PA tools can necessitate farmers to learn and develop new competencies such as flying drones and interpreting yield maps. At the same time, PA can shape new meaning of farm work and new expectation about a ‘good farmer’, changing what it means to be a ‘successful’ farmer from someone who is not only a data observer or data gatherer but also validators of PA models by using their local knowledge of agronomic and environmental phenomenon. We conclude that PA can alter social expectations about farming by reorienting the role of farmers. Policymakers and agriculture extension and outreach programmers can develop more socially relevant PA knowledge and innovation if they can attend to both new and traditional ‘good farmer’ identities. (shrink)

Emotions play an important part in moral life. Within clinical ethics support (CES), one should take into account the crucial role of emotions in moral cases in clinical practice. In this paper, we present an Aristotelian approach to emotions. We argue that CES can help participants deal with emotions by fostering a joint process of investigation of the role of emotions in a case. This investigation goes beyond empathy with and moral judgment of the emotions of the case (...) presenter. In a moral case deliberation, the participants are invited to place themselves in the position of the case presenter and to investigate their own emotions in the situation. It is about critically assessing the facts in the case that cause the emotion and the related (moral) thoughts that accompany the emotion. It is also about finding the right emotion in a given situation and finding the right balance in dealing with that emotion. These steps in the moral inquiry give rise to group learning. It is a process of becoming open towards the perspectives of others, leading to new insights into what is an appropriate emotion in the specific situation. We show how this approach works in moral case deliberation. A physician presents a situation in which he is faced with a pregnant woman who is about to deliver multiple extremely premature infants at the threshold of viability. The moral deliberation of the case and the emotions therein leads to the participants’ conclusion that “compassion” is a more adequate emotion than “sadness”. The emotion “sadness” is pointed towards the tragedy that is happening to the woman. The emotion “compassion” is pointed towards the woman; it combines consideration and professional responsibility. Through the shift towards compassion, participants experienced more creativity and freedom to deal with the sad situation and to support the woman. The paper ends with an analysis and reflection on the deliberation process. In the conclusion we argue for more attention to emotions in clinical ethics support and offer some directions for doing this in the right way. (shrink)

Family carers of individual’s living with Huntington’s Disease (HD) manage a distinct and unique series of difficulties arising from the complex nature of HD. This paper presents the validation of the definitive measure of quality of life for this group. The Huntington’s Disease Quality of Life Battery for carers (HDQoL-C) was expanded and then administered to an international sample of 1716 partners and family carers from 13 countries. In terms of the psychometric properties of the tool, exploratory analysis of half (...) of the sample, demonstrated good internal consistency and reliability. Some items on the full version did not meet psychometric thresholds and a short version (HDQoL-Cs) was developed based on more stringent criteria. Confirmatory Factor Analysis of the model structure showed a good fit for all Factors and, indicated that the HDQoL-C and HDQoL-Cs are psychometrically robust measures of quality of life. We found that carers who lived with and looked after their spouse/partner had reduced sense of coping, hope for the future and overall quality of life. Carers with children who were at risk, carried the gene or were symptomatic also had poorer quality of life outcomes. Findings indicated the HDQoL-C and HDQoL-Cs are valid in multiple languages and across varied cultures as measures of self-reported quality of life in family carers of individual’s living with HD. These psychometrically validated tools can aid and guide the implementation of therapeutic interventions to improve life quality in this population. (shrink)

In an effort to create new synergies to fill gaps in evaluation of value, assessment of quality, and definition of roles in clinical ethics programs we convened a meeting entitled Innovations in Clinical Ethics: A Working Un-Conference (the Un-Conference) in August 2018. The Un-Conference was conceived to be a working event aimed at promoting cross pollination and idea generation for innovative practices in clinical ethics. The event was attended by 95 individuals from 62 institutions, representing a wide (...) diversity of healthcare systems, who believed in the concept and brought their enthusiasm and expertise to share with others. As a product of the Un-Conference, whitepaper groups developed summaries and broad overviews of areas that need to be further addressed within our field. The whitepapers are being published in this issue of The Journal of Clinical Ethics. The first three whitepapers highlight the broad themes of demonstrating value to the institution, quality assessment, and emerging roles for clinical ethics programs and ethicists. The final whitepaper offers guidance to clinical ethicists engaged in pediatric ethics work and, in conversation with the emerging roles article, thoughtfully reflects on the role of pediatric ethicists. (shrink)

There is limited consensus about what constitutes humanly sensitive care, or how it can be sustained in care settings. A new humanised care assessment tool may point to caring practices that are up to the task of meeting persons as humans within busy healthcare environments. This paper describes qualitative development of a tool that is conceptually sensitive to human dimensions of care informed by a life‐world philosophical orientation. Items were generated to reflect eight theoretical dimensions that constitute what makes care (...) feel humanly focused. An action research group process in 2014–2015 with researchers, service users, healthcare professionals in two diverse clinical settings (stroke rehabilitation and dermatology) was used. Feedback on conceptual content, transparency of meaning and readability was then gained from a panel in Sweden and third‐year student nurses in the UK. The tool can be applied to attune staff to human dimensions of care, offering items which point to concrete examples of humanising and dehumanising features of practice in ways that have not yet been fully captured in the caring literature. Based on theoretically led experiential items, with dedicated focus on what makes people feel more, or less than human, it may offer improvement on available assessments of care. (shrink)